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Jun
03
2010

Our family’s neurological link to gluten

Brain Damage from gluten In light of  Dr. Peter Osborne’s (of the Gluten Free Society) and Dr. Charles Parker’s (of Corepsych), 7  part (so far) series discussing the impact of gluten on the brain and nervous system, I thought I would share the story of my oldest son and my husband in hopes of helping others that may be struggling to find out what has been causing their own, often mis-diagnosed, neurological symptoms.

I initially wrote this story out to share on Heidi’s amazing blog, Adventures of a Gluten Free Mom.  She wrote a wonderful post  that shared her long, thorny path to diagnosis and asked for others to share their stories as well.  The reason I feel so prompted to share our family’s story on my own blog now(even though I normally do not share information about my children) is that my son’s path to diagnosis was not that of a “typical” diagnosis, as described in any common medical textbooks (which I believe all need to be changed, by the way).  In fact, it was actually his neurologist and a very persistent mommy that finally led first to my son’s  diagnosis of Celiac Disease, and then ultimately to my husband’s.

My son’s story began about 5 years ago. He had just turned 1 and barely weighed 18 pounds. I had suspected something had been going on for months. He seemed so ill and frail at the time, yet doctors always had one excuse after another for his lethargy, paleness, distended belly, stomach aches, canker sores, joint pain, constipation, dark circles under his eyes…. (I could go on and on, but I will digress). I spent hours doing my own research and concluded that there was a strong link between his symptoms and his gluten consumption. I approached his GI doctors and they continued to tell me over and over that he was just a picky eater.

I was so frustrated. I started pushing for further blood work and was able to convince his doctor to run a Comprehensive Metabolic Panel in addition to a CBC w/diff w/plt. When his results came back, all of a sudden his doctor’s stopped look ing at me as the crazy hypochondriac of a mother. However, it was not Celiac Disease at this point that they thought he had.

Many of his numbers were very askew, but the one number that stopped them dead was his Alkaline Phosphatase levels. They had come back at a level of 5050 IU/L. Here is the scary part: the normal range for a child at his age is: 104-345 IU/L. The lab actually retested the results 3 times to make sure that it was not an error.

From Lab Tests Online :

“The alkaline phosphatase test (ALP) is used to help detect liver disease or bone disorders. In conditions affecting the liver, damaged liver cells release increased amounts of ALP into the blood. This test is often used to detect blocked bile ducts because ALP is especially high in the edges of cells that join to form bile ducts. If one or more of them are obstructed, for example by a tumor, then blood levels of ALP will often be high.
Any condition that affects bone growth or causes increased activity of bone cells can affect ALP levels in the blood. An ALP test may be used, for example, to detect cancers that have spread to the bone or to help diagnose Paget’s disease. This test may also sometimes be used to monitor treatment of Paget’s disease or other bone conditions, such as vitamin D deficiency.
If ALP results are increased but it is not clear whether this is due to liver or bone disease, then tests for ALP isoenzyme tests may be done to determine the cause. A GGT test and/or a test for 5′-nucleotidase may also be done to differentiate between liver and bone disease. GGT and 5′-nucleotidase levels are increased in liver disease but not bone disorders.”

All of a sudden, Celiac Disease was the least of our worries as the doctor started talking about the possibilities of bone or liver cancer. I will not go into all of the details of that time period, mainly for lack of space here, but needless to say, it was a sickening experience. My poor little 15 month old was put through so much blood work and endless tests. After ruling out certain cancers, they started to investigate all sorts of bone and muscular disorders. Everything continued to come up negative.

And yet, there was still this nagging feeling inside of me that Celiac Disease could still be a possible cause behind all of his abnormal results. I already knew enough about it at this point to believe that Celiac Disease can mess with everything in your body because it literally destroys your ability to absorb nutrients. And as I researched more, I found many medical studies pointing to Alkaline Phosphatase levels as an indicator of possible Celiac Disease. I literally had to beg them again to do another Celiac Panel AND run the genetic tests for the genetic marker for the disease. This time his Panel came back, in the words of the medical professionals, as “Inconclusive”. But he did, in fact, have one of the genetic markers for it (HLA-DQ2). Yet still the doctors did not think that this had anything to do with his insane lab results.

They were WRONG! I immediately went home, took him off gluten, and then watched my son live life again!! He became the toddler that I knew had been hiding behind those dark-circled eyes. His energy came bouncing back (literally) and his appetite, weight, height, and coloring just took off. He got back his sparkle.

And, 3 (gluten free) months later, when we did his next round of blood work, his Alkaline Phosphatase levels were down to 576 IU/L. And 2 more (gluten free) months later, they were down into the normal range at 319 IU/L. His intestines were starting to heal! He was finally absorbing his nutrients again. And, after meeting with an endocrinologist and naturopathic doctor, we finally concluded that his Vitamin D levels had been so low due to lack of nutrient absorption – resulting in the horrible levels. (Side note-he now gets major Vitamin D supplements daily, along with additional Magnesium, Calcium, Vitamin C,  a Super Multi, Liquid Minerals, Probiotics, Emulsified fish oils, and, on occasion, Zinc and some intestinal healing herbs).

The funny thing is that his GI doctors never officially diagnosed him. It was not until about 1 ½ years ago, when he woke up vomiting on a couple of different occasions, that my pediatrician decided to order an EEG for him, for precautionary measures. We were absolutely floored when the results came back showing that he was having seizure activity in his sleep. After a nerve-wracking MRI and a CAT scan to ensure that there was not a brain tumor that was possibly causing this seizure activity, his wonderful neurologist finally concluded that he had a typical EEG pattern of a patient with Celiac Disease. This pattern is actually caused by Calcium Deposits in the brain that occur over time from the leaking of nutrients (such as Calcium) into the blood from the damaged intestinal walls.  I just find it so strange that it was his neurologist that actually gave us the final diagnosis.

And after my post of my son’s story on Heidi’s blog, Dr. Ron Hoggan, author of Dangerous Grains,  posted a comment to it that really made me feel good about the nutritional supplement path that we are now on:

Hi Kim.  Rude et al have repeatedly reported magnesium deficiency as a factor in celiac related calcium metabolism errors. It might be useful to look into this issue, or even try supplementing with Mg.

The way I arrived at the correct dosage for myself is by increasing my Mg supplements by 50 mg. each day unitl I developed diarrhea. I cut back by 50 mg. and that is the dosage I take. With your son, you might want to start at smaller doses.

The magnesium supplements have had an enormously positive impact on my life.

I believe that many physicians don’t keep up with celiac disease because they view it as a trivial food allergy and do not believe it is a very meaningful factor in “more important” findings such as abnormal liver enzymes. Many of them imagine that reactions to gluten will be obvious to parents and/or those with symptoms.”

Today, my son is finally thriving. He is a super healthy, happy, rarely sick (only 1 cold and no flus this winter), full of energy, too-smart-for-his-own-good almost 6 year old.

And now my husband also has an official diagnosis of Celiac Disease.  I will not go into his story so thoroughly, but I will say that his diagnosis finally gave him the understanding of why he had suffered from intestinal distress for so much of his life.  And after he was gluten free for about a month, he realized that the “brain-fog” that he had described to me for years had disappeared (and now he knows when he gets “glutened”, because it comes sneaking back).  We have since realized that his Celiac Disease was most likely to blame for his blanket diagnosis of Attention Deficit Disorder that he had received when he was in college.  Today, I think that he feels like a new person, and I can definitely say that he looks like one! Going gluten free, without any other lifestyle changes, helped him to lose 15 pounds, just like that (lucky little stinker).

Our family is now LIVING gluten free.  I am gluten free (and pretty grain-free) by choice because I just feel so much better that way.  And, although my youngest son has never had any digestive, allergy, or neurological issues (really, he is as healthy as a horse-and eats like one, too), he is totally gluten free as well.  I always hate it when I tell people that my son and husband have Celiac Disease and I get looks of total pity.  I do not want anyone to feel sorry for something that I feel is a blessing.  I honestly believe, with ALL OF MY HEART, that what IS the story of our family’s diagnosis is the best thing that has ever happened to our health.  We have been placed on a path that has changed the way that we look at food forever.  We eat so healthy now because being gluten free means that we can eat loads of fresh veggies, fresh fruits, greens, organic meats and whole foods (that do not come from a box) without ever having to read a label.  And how often can you boast that your 5 year old will eat an entire plate of organic greens without even blinking an eye?

The bottom line is that you have to fight for what your gut feelings are. You have to fight for yourself and fight for your kids. We are just on the cusp of big developments in Celiac Research and hopefully stories like these will not be the norm anymore!

If you have a story about your path to being gluten free (whether it is due to Celiac Disease or a gluten intolerance) that you would like to share, I would love for you to do so here.  Maybe, by showing physicians the real life stories (not “textbook” stories) of people whose lives have been changed forever by going gluten free we can help to change the way they look at these “Dangerous Grains”.  We are a community that can have a very powerful voice!  Let’s start shouting!!!

Food Allergy Coaching with the Allergy Free Food Coach

Kim Maes - Allergy Free Food CoachKim Maes, CNC, AADP, known as the Allergy Free Food Coach, is a Certified Nutrition and Wellness Consultant and Certified in the Practical Application of Food Allergy Guidelines.. She is also the creator of the Cook It Allergy Free iPhone and iPad Apps and the Cook It Allergy Free website, where she shares her passion for teaching others how easy and delicious it can be to eat whole, pure allergy-friendly meals that the entire family will enjoy.

30 Comments
  1. On June 4, 2010 Dr. Peter Osborne said

    Wow! What a journey you have been through. I am glad to see that it is turning out well for you and your family.
    Thank you for sharing. All too often people are discouraged from going gluten free by those who do not know it’s far reaching health implications. I am sure your story will help many people to come.

    I too collect stories of success on the gluten free diet. I post them at the following link:
    http://www.glutenfreesociety.org/gluten-free-testimonials/
    Feel free to share them.

    All the best,
    Dr. O

    • On June 4, 2010 Kim said

      Thank you so much, Dr. Osborne. I appreciate you taking the time to read our family’s story! I think that we are just at the beginning of seeing big changes in how other physicians view the damage that gluten can cause, thanks to doctors such as yourself!

  2. On June 4, 2010 Scott said

    This is a fantastic website, covering such an important and growing issue.

    I just wanted to quickly recommend Hemp foods as an allergen free gluten free option. They are very nutritious, easily digestible and versatile.

    My niece, who is now almost 5, has allergy issues and Hemp foods have made it really easy for her to enjoy all the things that she was missing out on. Our whole family has made the switch, not because we have to but because we wanted too!

    I would suggest Manitoba Harvest Hemp Foods & Oils (www.manitobaharvest.com) they are so fresh. Plus the company is farmer owned, they use fair trade and organic ingredients, and Hemp is very sustainable so it is a WIN WIN for everyone.

  3. On June 4, 2010 Amy @ SS&GF said

    I stopped by to tell you how much I’ve enjoyed talking with you on Twitter – I had no idea that I’d also be fully inspired by your journey. A mother’s love runs deep and has the power to move mountains. You proved that.

    • On June 4, 2010 Kim said

      Amy, your kind words mean so much to me! Thank you ;0)

  4. On June 5, 2010 gluten free easily said

    Oh, Kim, this post made me cry. So many parents have gone through what you went through with your son and have not pushed forward like you did. Amy’s right. It’s a mother’s love that pushes one forward with brute force. I am so thankful your son is the healthy little guy he should be now! I am short on time so I can’t fully comment right now and my own story is another book in itself, but wanted to tell you how glad I am you shared your story. I’m going to share it all over. We often can’t accept the answers we are given when our loved ones are still ill. With only 3% of those with celiac diagnosed and more who suffer from non-celiac gluten issues still suffering, how can we accept these non-answers we keep getting? You are so right. You have to trust your gut always.

    Hugs and great admiration for your mission,
    Shirley

    • On June 5, 2010 Kim said

      Oh, Shirley! Thank you so much for your wonderful comment. If we can just get the word out to let people know that just because their doctor closes the door on a diagnosis, we do not have to! Gut instincts, especially a mother’s, are usually right on.
      I feel so honored to be a part of this wonderful community and your support means so much to me! Thank you!

  5. On June 5, 2010 SarahB said

    Thank you so much for telling this story, Kim! Your son’s early struggles remind me so much of my son. He “failed to thrive” from birth but it took 3 months, and unnecessary tests just to identify his dairy allergy, and a doctor switch, serious health issues, and lots more tests before it became clear he was allergic to a multitude of foods. At 9 months old when he was particularly sick (and before we discovered the allergies) the pediatrician ordered a large panel of tests so many things were very wrong, they were concerned it may leukemia. A lot of focus was also put on his kidneys (which proved to be normal) because his blood was so acidic. He was very anemic as well. Once we found a strict allergy free (for him) diet, it was like he finally woke up. After a year of always looking sickly and sleeping most the time he started interacting more, racing through missed milestones, and really thriving. Doctors and everyone in general need to recognize that food can have serious consequences, and not everyone has the “textbook” reaction.

    • On June 5, 2010 Kim said

      Sarah, it is amazing how many stories you hear that are similar to both of our sons. It is also quite frightening! The story of your son sounds so similar to ours, especially when you said “it was like he finally woke up”! I felt the same way. I remember feeling so excited that he was not napping for 3-4 hours a day anymore. Weird, when really many parents would give anything for that. But I just new that his lethargy was not normal and was thrilled when he wanted to go outside and play ALL DAY!!
      Thank you so so much for sharing your sons story as well! ;)

  6. On June 5, 2010 Tracie Neyman said

    Thank you so much for sharing your sons diagnosis . It sounds so much like i went through except mine lasted 40 years. I honestly believe doctors do not want to diagnose this disease because if they do they lose a cash cow. I use to go to the doctor twice a month. Now i go to the doctor once a year only if i have to. At 1 time i was seeing 6 different doctors they considered them my team as they were to try to diagnose me. They told me i had
    multiple sclerosis,scleroderma ,fibromialgia, asthma,high blood pressure, gastrointestinal disease, white matter disease. I had to have strictures dilated in my esophagus four times and urinary strictures removed as well. Without gluten in my diet I’m almost a normal person.

    • On June 5, 2010 Kim said

      Tracie, thank you so much for sharing your story as well! What a ride you have been on!
      I believe you are 100% right about losing a cash cow with a Celiac Diagnosis. The only treatment is a gluten free diet – no medicine, no more frequent doctors visits, etc. etc.
      I am so happy that you are doing so well now and that going gluten free was your answer! ;)

  7. On June 5, 2010 SarahB said

    Kim, I got the “what a good baby” too because he was sleeping up to 20 hours a day. That is NOT normal for a 3 month old and I knew it. He was nursing 12 hours a day (in his sleep even) and hardly gaining, sometimes losing, weight. All because of sensitivities to food in my diet. My little guy is quite a handful now, and in to everything, but it is such a relief because we didn’t know if he’d ever be able to do that. As strange as it sounds I am thankful for the day where he accidentally touched peanut butter and reacted, because that is when things finally started falling into place.

    • On June 5, 2010 Kim said

      Sarah, everything that you have written about your son sounds so familiar – always nursing, never gaining weight, sleeping for hours on end…
      I hear you on being grateful for finding out. I feel like after all the other things that the dr’s thought it could be, being given a Celiac Diagnosis was like being handed a wonderful present! No cancer, no meds – just a lifelong diet change. I was not about to complain. After all, I love to cook so I embraced it as a challenge to see what I could create in the kitchen that we would all love.
      Well done in being a persistent mommy yourself!

  8. On June 5, 2010 Maggie said

    Thank you so much for sharing this story. It must’ve been a heartbreaking journey to get here!
    I totally agree with you about your son’s diagnosis being the best thing for your health. It truly amazes me how deeply our children affect our journeys! My son was diagnosed with a gluten intolerance before Christmas. My husband has celiac.
    An intolerance was all I needed to hear to know that gluten-free living was the way for us. I don’t need to put my son back on gluten just to wait for a celiac diagnosis! And we’re all better for it. My daughter has been gluten-free since birth and she’s doing just fine! I find that when I do eat gluten (sometimes when I’m out on my own without my kiddies) I get bloated for 3 or 4 days after. It’s better for all of us to be gluten-free. And the only time I have to look at a label is when we’re out or at someone else’s house. Packaged-free is also the best route for us. It feels fantastic. I loved reading your story, it’s always great to hear what other moms are doing.

    • On June 5, 2010 Kim said

      Maggie, I had to laugh, because the only time I break the gluten free diet is if I am out on a rare night with just my girlfriends! And, YES…I feel bloated for days and then always have to remind myself of why I should not do that!
      Thank you so much for your kind words. They really mean a lot to me. It feels so nice to be part of this wonderful community of people that are so determined to do whatever it takes to keep their families gluten/allergy free and healthy!!
      By the way, I have read your blog for a long time and I LOVE IT! ;0)

  9. On June 5, 2010 Heidi said

    Hi Kim!

    This post gave me goosebumps! Thanks for the kind words and the mere fact that you wrote this post, made my posts completely worth it. I had struggled to write them for the past year, not knowing the ramifications. I am so glad I finally did and the sad thing, I am not yet done! Being overlooked by doctors for 20 – 25 years has come with a heavy price but hopefully by sharing our journeys, someone else can get diagnosed sooner, like your son. What a great life he now has ahead of him because of your diligence!!!

    I completely agree with you on the blessing part, I often tell people that being diagnosed with celiac disease was THE BEST thing that has ever happened to me (sans the chronic health conditions). Having a 6 and 2 year old that do not eat the “standard American diet” is proof positive to me that children’s taste preferences are developed from the first bites they take. Teaching our kids from the get-go to eat and love healthy, whole foods is the best gift we can give them and it will last a lifetime.

    I am so proud to call you my friend, xoxo
    Heidi

    • On June 5, 2010 Kim said

      Heidi! You are such an inspiration to me! I am not sure I would have had the courage to post this story if you had not shared yours with all of us! You should feel so proud of what you started and the wonderful response you have received from sharing your path of your own chronic health conditions. And now, you are on the path to amazing healing through your own powerful determination!

      I think all of our children are so blessed to have parents that are going to make sure that their idea of a typical meal includes the healthy, whole foods that our great grandparents would still recognize! And, I know I have said this before, but I feel so so lucky to have been brought into this amazing community and the friendships that I have developed through it all!

      I, too, am proud to call you my friend!
      I am so grateful for your wonderful words and inspiration!

  10. On June 9, 2010 Aunt Jayne said

    Oh my gosh!
    This is the type of thing that inspired me to start my newest blog http://celiacandwhat.wordpress.com
    I understand the fright and frustration because, I too, had Neurological issues. My Neurologist didn’t have a clue – my mother figured it out! She was almost 80 at the time)
    I wrote my story on http://glutenfreewithauntjayne.wordpress.com and asked others to add their stories to MY comments section!
    I am so happy this has been sorted out for you! I think that proves, once again, how important it is to raise awareness about this disease.
    Thank you for sharing this story with us.
    Take care of you,
    Aunt Jayne

    • On June 9, 2010 Kim said

      Hi Aunt Jayne! I think that http://celiacandwhat.wordpress.com will be a wonderful resource for people. I think what you are doing is so important to show that it is just not normal GI issues that will be your sign to go gluten free! And your story is quite powerful as well!

      Thank you so much for your support!!

  11. On June 11, 2010 Angela said

    Hello my name is Angela and I wanted to share my story.
    When I was 15 years old I was diagnosed with AML Leukemia. After 2 years of high dose chemotherapy treatments my cancer went into remission. I have been cancer free for 22 years now. Over the years I have been a somewhat healthy person and haven’t any issues except minor depression and anxiety. However, for the 3 or 4 years I started to feel exhausted all the time. I went for my Check Ups every 6 months and my CBC was good so the Dr. would just say It’s was Depression or the Antidepressants that I was taking that made me feel so chronically fatigued.
    I constantly worried my cancer had come back because I felt so bad. The fatigue just kept getting worse so the Dr. suggested I switch to a new AD drug. I changed my meds over and over and was still exhausted. No matter how much I slept I could barely get through a days work. I wasn’t able to think straight anymore and couldn’t stay focused.

    The Dr. then decided I “must have” ADD so he prescribed me Adderal. At first the adderal gave me the energy to get up out of bed in the morning but by the end of the day I could barely drive home from work. Eventually the Adderal only worked for an hour or two before I got tired. Some days I couldn’t even tell I had taken it. I eventually became too exhausted to do anything. All I could do was work and come home and go straight to bed. When Friday afternoon came I would go straight home after work and go straight to bed. I stayed there until Sunday. I became so depressed about bieng so exhausted and not having the energy to have a life. I stayed so stressed at work and couldn’t handle anything because of feeling so bad. It didn’t matter how many times I went to see several Dr’s and. it was always the same old thing. Aww your just depressed and it’s just in your head.

    After a friend referred to a new Dr. that she thought was wonderful, I decided to give it one more try. At my appointment the Dr. made me feel she was going to get to the bottom of it and she did. She sent me home with an Adrenal Saliva Stress test and did blood work. I went back to see her to go over my results. I had severe adrenal fatigue, hypothyroidism, high insulin levels, high dhea, low iga, several Vitamin dif., low progesterone and tested positive for Gluten Intolerance. Normal was 1-12 and 13 was positive and 20-25 was severe reaction to gluten. Mine was 75.She then ran a Celiac blood panel and tested for HLA genes. I tested positive for the DQ2 gene.

    She went over all the results with me and said that she believed I had celiac disease but couldn’t give me an official diagnosis without sending me to a GI Dr. for a intestinal biopsy. She recommeded that I go on a GF diet asap along with taking some minerals and supplements to support my adrenal glands and she wrote me a presc. for thyroid med. I decided not to do a biopsy and just go with the GF diet and take the meds she suggested. I have been GF for a week and a half now and I can already feel a differance. I feel more alert and more calm. I have noticed that I am starting to have more energy and haven’t had the horrible headaches I was getting on a daily basis before. I still have a long way to go to recovery from all the damage that was done to my body. And alot to learn about bieng completly gluten free forever.

    At times I get furious with the Doctors that just brushed me off as bieng this crazy depressed person who just worried too much. If only they would have listened to me. I knew that there was something causing this chronic fatigue and brain fog besides depression. I just wished that one of the many Doctors I seen them would have looked a little deeper. They only caused me more harm by writing all these meds for sleep, stimulants and depressants. I can’t wait until I have completly winged myself off all these “prescribed: horrible addictive drugs and start living normal again. I know it’s just been a week and a half since going GF but I look forward to having my health back.

    • On June 12, 2010 Kim said

      Oh my goodness, Angela! What a story! I am so glad that after all this time, you may just have your answer. Celiac Disease can affect individuals in so many different ways and it sounds like your path to diagnosis was quite a difficult journey. Thank you so much for sharing this here. I am so glad that it is not your cancer that is back! Going gluten free is a challenge-no one will argue that-but it is reassuring to know that there is so much support and so many wonderful resources out there. Just check out all of the other wonderful bloggers that I have listed on mine. There is such a community out there wanting to help others understand how it can be fun and delicious to live gluten free!
      Adrenal fatigue is also a challenge to overcome, but I only hope that you can see significant improvements in the adrenal fatigue as you begin to heal from the damage that gluten has caused. As your intestines heal, hopefully you will also find that some of your vitamin deficiencies also get better as your body begins to be able to absorb nutrients more efficiently.
      Take care of yourself and keep us posted as you learn the ways of going gluten free!

  12. On June 18, 2010 Alta said

    What an exceptional post. My heart goes out to you and your family for having to go through the struggle that you did! I do feel the same way, when people comment that it must be a struggle to live gluten-free. It’s not – at home, in our kitchens, full of fresh, healthy, naturally gluten-free food, it’s nourishing, welcoming, and natural. I too find it a blessing. Continue to love and take care of your family – you are obviously a loving mother with a big, big heart.

    • On August 5, 2010 Kim said

      Alta, thank you so much for your kind words! As mothers, we do not feel like we are doing anything special when we are just trying to make sure our children are safe and healthy! I love living gluten free! One, because of the amazing health benefits, and two because of how it has brought me into a world filled with amazing people, just like you!

  13. On November 17, 2010 nicola @ gfreemom said

    Wow Kim. I can only begin to imagine how stressful that initial time of diagnosis must have been! So great that you came through it – and came through it so strongly.

    Our journey to helping my son being gluten free came through Tibetan medicine. We came up against brick walls with our pediatrician and GI. The whole family is now gluten free at home, although my husband will splurge and have his gluten fixes when he is at work. I find that if I can’t resist a bread-fix and then have it, I only find myself disappointed and sluggish. I’m also especially conscious of diet since my scary breast cancer ‘episode’ and believe that eating healthily and ensuring that my body can absorb all of the nutrients that it needs is key to staying healthy – and staying alive.

    So grateful for having met you!

    Nicola xo

    • On November 17, 2010 Cook It Allergy Free said

      Nicola, I too am so grateful for getting to know you through our special group!
      And I am absolutely fascinated with Tibetan medicine, so I would love to talk with you sometime about your journey to get your son healthy. It is so frustrating that the doctors we are supposed to trust cannot give us the answers we need.
      Oh, and i so hear you about how you feel the day after eating bread. Every now and then i will cheat when I am out without my family. And every single time I feel miserable the next day and get so mad at my self! Ugh!
      My mom has also been very vigilent since her own breast cancer struggle and watches every single thing that goes in her mouth. I do as well since breast cancer has a long history in my family.
      I am so amazed and proud at how you overcame your breast cancer.

      xo
      kim

  14. On January 25, 2013 Jaime said

    Thank you for sharing your story!! My 8 yr old son has been constipated for 7 years. Also has had joint pain for 3+ yrs. And eczema for about 7 yrs. We have been to many specialists for his joint pain and he has had many tests/labs done and the doctors couldn’t find anything wrong. He loves sports and plays many of them but has a hard time running and moving around. For the last two years I have been really concerened with his joint pain and weak muscles. I started reserching gluten senstivity and celiac. I had a strong feeling that this was the answer to his problems. He has been tested for celiac 3 times from different doctors and always negative. I highly suspected gluten sensitivity. I decided to try a gluten free diet for him 2 months ago and within a month I noticed a huge difference with him complaining about his joints. He also told me that his knees don’t hurt anymore and also his feet(which he hasn’t complained about for 2+yrs)
    My son was living in pain everyday and not one doctor could figure it out. And when I mentioned gluten possibly being the problem they looked at me like I was crazy:) So glad I went with my gut and took him off gluten. I have also seen an improvement with his eczema and other skin problems but he is still constipated. Just wondering if you know how long it will take for that to get better? Or do you have any tips on helping with that? Thanks again for sharing your story! I’m glad you finally found your answers and your son is healthy:)
    Jaime

  1. [...] This post was mentioned on Twitter by Patti Westfall, Kim. Kim said: This is the story of my son, his seizures, a neurologist, and a Celiac Diagnosis http://bit.ly/d34SQy [...]

  2. [...] This post was mentioned on Twitter by Kim, Amy Green. Amy Green said: An inspirational story about a mom fighting for her son's health from @cookallergyfree http://ht.ly/1Up6h [...]

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