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Type 1 Diabetes and Gluten: A real life story

Brain Damage from gluten

Today’s post is a guest entry from my dear cousin, Emily (she is actually my husband’s first cousin – his side of the family is the one with the  Type 1 Diabetes and Celiac Genes – in fact, our family is scientific proof of the link between the two since we have multiple members with both diagnosis’).  She has so kindly shared her story about her own path to diagnosis, from Type 1 Diabetes to her troubles with gluten, dairy, and soy.  It is a long story, but SO worth taking the time to read through.  She has struggled with so many different symptoms and complications that most would never attribute to gluten and other food sensitivities.  I am so proud of how diligent and dedicated she has been to restoring her health in as natural a way as possible.  Her story touches on weight issues, hormone problems, mood and energy levels, and  so much more – issues many of us are struggling with each and every day.  It is an inspiring tale in that her determination has resulted in such positive benefits to her health!

Emily’s Story: “As a 6 year old girl, you’re allowed to be small, but when you weigh 39 pounds, that might be cause for alarm. In fact, for me, that was a huge red flag to my mother. She took me into the Dr’s office because I had been going to the bathroom a LOT and had been asking for water constantly. She thought I had a bladder infection but when I stepped on the scale she knew something more was wrong. The doctors had me pee in a cup (not an easy feat for a tiny person on those industrial toilets, let me tell you) and they tested the amount of sugar in my urine. Turns out there was quite a bit of excess sugar and my pediatrician made the call of “Diabetes” with almost no other testing. He sent us straight to the hospital and I was diagnosed on November 11, 1995 with Type 1 diabetes. I stayed in the hospital on an insulin drip for a few days and my parents (and to my excitement my older brother) took turns staying the night on the pitiful cot in my room. About all I remember was eating a lot of green grapes,cottage cheese and jello; a nurse in training who couldn’t, for the life of her, hit the veins in my tiny little arms, thus resulting in a lot of needle sticks just to draw blood; and the Nintendo 64 movable entertainment system complete with Mario games and Banjo Kazooie. My parents came up with all sorts of things to try to cheer me up (look! a blown up glove looks like cow udders!) but ultimately I think they were trying to calm themselves down as much as me. My life changed drastically, but to be honest, now I don’t really remember life before diabetes so this lifestyle doesn’t really seem so cumbersome.

Sure I had my times of “I HATE DIABETES!!” and refusal to eat at specific times to counteract my insulin which was to start working at a designated time, but now I’m pretty well rooted in the fact that this disease is really a part of who I am. In fact, I think that a good portion of who I am and how I handle situations has been shaped by the fact that I can’t ignore this aspect of who I am and must therefore embrace it rather than try and forget it exists.

I went on an insulin pump in 6th grade and have developed my own routine of on and off pump therapy combined with the option of long-term insulin once a day with supplemental single injections of short insulin (there is a lot of graphs and schematics which could be inserted here to help explain the basics of different therapy options but a good overview can be seen here ). My way of dealing with my diabetes was not what they teach at the centers but my doctors never really could scold me for it because it seemed to work for me. I forged my own path and surprised my parents, doctors and even myself when I came back from my first few months of college with the best A1c yet. (An A1c is like a 3 month average of all your blood sugars and is an important element in overall diabetes care. Good A1c’s are correlated with reduced risk of heart disease, cancers, blood pressure/cholesterol maintenance, etc). My diabetes also made me more aware of my body and how I was feeling than most of my friends and people my age. Being able to read your body’s signals to determine your blood sugar’s direction is very important to good care. I was conscious of my food choices already as a diabetic and as an athlete. And I also LOVED to bake and cook. My birthday gift of choice for friends was always a handmade cheesecake or other delicacy.

College was a place for me to continue growing, but unfortunately I was growing in more ways than one. I started gaining quite a bit of weight the second semester of my freshman year and was having a very hard time taking it off (even though the end of my freshman year was accompanied by hour long workouts 5-6 days a week and in the fall I had been quite svelte and slimmed down with less exercise). I would gain muscle and lose no fat! The day that I felt hopeless panic was when I tried to put on my largest pair of jeans and couldn’t even button them. I knew something had caused this. Sure I hadn’t been the skinniest person in high school but I was definitely not as hefty as I was then. The only thing that I could think to blame it on was that I had started on a birth control that fall. When I started to think about it… a lot of other things started about 2 months after that dreaded pill. I had started on the pill to make myself regular and to lighten up my periods a bit. I didn’t want to think/worry about when aunt flow would wonder into my life while I was in the middle of making new friends and starting new classes during that freshman year. I started getting cramps, I was crabbier before my periods, I got more acne, more bloating, more fatigue and I started getting constipated… a lot.  This all started about the end of December (I started the BC around October). Anybody that knows anything about why some people take BC knows that usually they take it to REDUCE the amount of all that fun stuff, but not me. So I went back to my school nurse, told her what was going on and she switched me to another birth control after taking a month off the other one. When I came home for the summer I saw my dr about the growing trouble of the constipation. He told me to “drink more water, eat more fiber and exercise more.” Okay, I thought, that’s easy. I ran more, drank large nalgenes and ate more whole wheat. Well, that didn’t work, and it didn’t work after all my other dr’s told me the same thing- doctor after doctor. “Water, exercise and fiber.” Eventually one Dr put me on a dose of miralax everyday (supposed to be a stool softener which is non-addictive).  The other BC made all that other stuff better for about a month and then it came back. This time I was on that type for about 3 months, then I went to my gyno. I told her I was frustrated about all the symptoms and weight gain. She said that it’s not PROVEN that weight gain was a symptom of BC and that she said that some women experience some constipation before their periods so it was probably normal. She put me on YAZ because it was supposed to have milder side effects.

Three months later, and I was still having all the problems as before.

The first month of my sophomore was heralded in at a hefty 155lbs (my heaviest yet) and I decided to join Weight Watchers. I might say that this is where things started turning around for me. I started losing weight and slimming down. I was down 20 lbs by January when I left for Semester at Sea. In October I was so fed up of having to deal with paying for BC which was making feel crappy and halting my weight loss that I just stopped taking it. November came, no period. December, no period. Hmmmm. This didn’t seem normal and I was about to embark on a 3 1/2 month journey around the world on Semester at Sea (my diabetes was doing great through all of this trouble so that was a relief, at least). I went to see my Gyno again and told her I hadn’t had a period in 3 months and was leaving the country in a week. She gave me a shot of progesterone and told me I would probably get it in about 2 weeks. Well, 2 weeks went by and no period. January, Febuary, March, April- all period-less. I didn’t get a period until the very beginning of May… after being Gluten free (or mostly GF) for about a month and a half.

Why eliminate gluten? Well my friends, I had been dealing with some other problems after life on the ship started. I kept complaining to my mother about this or that. She googled it and one of the top responses was Celiac’s disease. Type1 diabetes and Celiac disease are often connected, so it wasn’t a connection she wasn’t willing to look into. She told me about it, I wiki’ed it and all the other symptoms seemed to match up (at this point I had very dry skin especially on my hands [had all my life], hair loss, joint pain in my knee where I had never had problems before, constipation, missed periods, fatigue…) and there was another girl on the ship with Celiac’s who I had talked with about it. I took out bread, pasta, my morning all bran, tortillas, etc. I messed up and wasn’t completely GF because I didn’t know about oats and was using granola bars as snacks for Low blood sugar, I was eating corn flakes or rice crispies which have malt, and would sometimes eat broth from noodle soup, just not the noodles. I didn’t know better but I FELT better. I was exercising every day, eating well, losing weight and losing a lot of body fat, and was a happier person. My constipation was even alleviated a little bit and I wasn’t on Miralax except some bothersome days.

When I came back to the states I got a blood test done for Celiac’s. It came back negative (YES!! I CAN EAT PIZZA!) but I had been Gluten free, so I started eating gluten again and then a month later was  tested again. Negative again. Well awesome! Except not. My summer was plagued with terrible fatigue which would feel like my arms were filled with sand and my mood was often sour. My period never came back after May. I was trying to keep up my exercise regiment and was running at home but I slacked off more and more because I was so tired. My constipation worsened again too to the point where I got a colonoscopy to check for blockage or cancer. It came back negative which was exciting but frustrating. The gastrologist put me on Amitza, a pill to relieve constipation twice a day. I reacted terribly to it during the day with nausea and the spins/headaches so I would only take it at night right before bed. It did it’s job but I was worried about staying on it long term and it was expensive.

I went back to college early in the end of July to start work, and by August and the beginning of school I was having trouble concentrating, the fatigue was terrible and my weight (even with weight watchers) was creeping back on because I wasn’t exercising. My dad talked to a functional medicine nurse he had worked with and she suggested a test trough the EnteroLab. I decided to get the test for gluten and dairy sensitivities as well as the Celiac Gene, after trying to work out one day after eating pasta and about passing out at the gym. We decided to test dairy too because it had similar symptoms as gluten. My test came back as a bit of a blow.  I had come back with IgA responses to both Gluten and Dairy as well as testing positive for the Celiac gene (though it said I wasn’t testing positive for Celiac itself.) The fat score had come back that I didn’t have intestinal damage (aka no malabsorption), which was about the only positive thing I could see here.

Gluten Sensitivity Stool and Gene Panel Complete *Best test/best value

Fecal Anti-gliadin IgA    88 Units   (Normal Range is less than 10 Units)

Fecal Anti-tissue Transglutaminase IgA    29 Units   (Normal Range is less than 10 Units)

Quantitative Microscopic Fecal Fat Score    Less than 300 Units   (Normal Range is less than 300 Units)

Fecal Anti-casein (cow’s milk) IgA    20 Units   (Normal Range is less than 10 Units)

HLA-DQB1 Molecular analysis, Allele 1    0302

HLA-DQB1 Molecular analysis, Allele 2    0301

Serologic equivalent: HLA-DQ   3,3  (Subtype 8,7)

So I took out Dairy (casein) and gluten (and this time I did it right, with the removal of all that extra stuff I didn’t do the first time.) I felt a lot better but was still having bad bouts of fatigue. I started noticing that it was often correlated with eating soy. So about a month after I took out Gluten and Dairy, I took out soy. About 2 weeks after that (as I was feeling better) I got another enterolab test for soy done. It came back with IgA responses to that too. So Soy was out too – including Soy Oil and Soy Lecithin.

Soy Sensitivity Stool Test

Fecal Anti-soy IgA    34 Units   (Normal Range is less than 10 Units)

I dropped 5 pounds without a problem (and actually eating more than I was before) and I felt more alive than ever. My hair stopped falling out, my hands weren’t as dry (I started using an almond/oatmeal soap bar rather than harsh Dial or other common hand soaps). I started exercising again and was able to maintain about 30 mins of cardio work, which seemed impossible before. I embraced the challenge of baking with gusto and enjoyed making healthy and gluten/dairy/soy free baked goods. I pulled my knowledge about how to accept my diabetes and thriving with it and applied it to my new diet. But I still hadn’t had another period so I went to a gyno out in CA who told me after some blood tests, that I had very low estrogen levels. No estrogen meant no lining which meant that no amount of progesterone would make a period happen. She wanted to put me back on BC to control it and I said NO. I didn’t want to go back to cramps, acne and terrible mood swings. I told her that I thought I would get it again soon cause I had gone off gluten and that seemed to help last time. I got some semblance of a period over Christmas (the 25th actually; thanks, Jesus) but still nothing like a normal period.

I saw an allergy doctor in December and was tested for allergies to apple, barley, corn, oats, rye, rice, wheat, soybean, casein, milk, green pepper, beans (lima, navy, string) and coffee. I mildly reacted to only apples, and not enough to keep me from eating about one a day! So in Jan I went to a functional medicine doctor with an MD degree. He was worried that I had a thyroid problem (something that I’d been tested numerous times for before and shown no sign of) or adrenal glad problem. He put me on various things including d-penitol and cytozme (to spur my ovaries and pituitary gland to start producing hormones again), sea salt, and B12 and P5P (b6) which he said all diabetic need. The only thing that seemed to work was the MSM for my knee (which was diagnosed as low cartilage), and even he was surprised when I came back home for Spring Break and had no period yet. He had me do an Organic Acids test. I came back with high levels of Glucarate (detox indicator), Benzoate, phenyfacetate, p-Hydroxybezoate (bacterias), Citrate and succinate (energy production), low sulfate and high D-arabinitol (yeast).

With this he put me on garlic pills to treat the yeast infection (I had had a skin yeast infection that past fall which my dermatologist gave me pills for and it went away, and I had BAD oral thrush which I didn’t know was oral thrush until I started reading about candida yeast infections.) And it worked, my oral thrush went away and I had even more energy. But I still had constipation and it still got worse before my period. So when I saw him over Spring Break I told him I was tired of paying for things that weren’t working and I wanted a blood test (insurance pays for that). I finished off my pills, waited a month and when I came home for this summer I took some tests. Those came showing that it looked like my estrogen and progesterone looked a little low but because I was lucky enough to go in on one of those rare days when I had spotting (period!?) that we had a reference point for what my levels should look like. We decided that I wait until I think I’m about a week outside my ovulation and then take more tests thinking that it is a problem with my progesterone (which spikes in your second half of a woman cycle, after ovulation). If the levels are low or high we’ll deal with them then.

On the other side of this problem – the food.  I went on an elimination/detox diet when I got home this summer. I took out a LOT of foods and slowly put them in. I designated weeks for soy testing (giving myself enough time to try some, wait three days and look for symptoms and then try it again), dairy testing and gluten testing. I felt AMAZING after my first week off refined sugars, caffeine and fake sugars (other than stevia) and have been reluctant to add them back in, I only recently decided to try diet coke (which was my drug of choice before) and found that I’m not so fond of it anymore. Soy was first of the big 3 to try and I have had no reactions, as far as I can tell, to it. I’m very excited to be able to eat many types of Chocolate again! Dairy I’m not so sure about. The first time I tried it I had a GF pizza and low fat mozzarella. That night and the whole next day I had bad bloating and painful stomach ache (gas?). I waited 3 days and tried to eat some greek yogurt. That day I had no stomach issues but I had a very off day. I was tired and very melancholy and had an on/off headache. I talked with my functional dr and he said that it could have been a reaction to the yogurt or my body trying to have a period. I decided to wait on the milk thing and try it later. The most exciting thing for me was the day I was to try gluten. I had a piece of gf toast. And it was marvelous, but I felt spacey, brain foggy and almost drunk for the rest of the night. My symptoms luckily have not lasted longer than a day or a day and a half.  I had also accidentally glutened myself a few days before this by eating a marinaded chicken with soy sauce (forgetting that soy had wheat) and I had similar brain fog for a couple hours after I ate it. So that seems to be my problem with Gluten. I’m going to try dairy here soon again to see if I react the same way. I have to think positively because I think I’m very subject to mentally giving myself symptoms. I don’t think that I’ll ever eat gluten full time again because when I tried that everything got worse, but its good to know that I can have it sparingly and if I eat crumbs in the peanut butter I won’t die.

As of right now, Im just starting to put some caffeine back into my diet and I’m watching my sugar intake. I’m managing my diabetes, starting back on WW because my weight is creeping back up.  I am also slowly testing dairy and soy again. Gluten is out but I think that I’ll be able to have a slice of cake or a sip of beer every once in a while. I’m in no way going to eat it every day.”

Thank you so much for taking time to read this story.  If it resonated with you in any way, or if you have a story to share of your own, please leave a comment here.  I would love to hear from you!

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