Celiac and Diabetes

Well, since Celiac Disease (Gluten Allergy) is such a prevelant disease with diabetes, I figured we needed to have a group for it. Let this be a group for questions and suggestions.

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Comment by Sheila Fitz on December 10, 2012 at 8:59pm

i'm on a Celiac List, and there are soooooo many false negatives. It is my understanding that they only test for reactions to wheat gliandin, when other grains like rye and barley cause the reaction, too. The Gluten Free Society feels that corn should be eliminated. I test negative to the Celiac immunoassays, but I have two dds who can only stay well if they are gluten free, and at least, one of my dds and I share the gene that is common to Type1 an Celiac. I don't eat carbs now because of the D, so I'm essentially gf.

Comment by Trudy on December 10, 2012 at 5:32pm

P.S. Living Without Magazine is excellent re Celiac and other allergies, There are often other allergies/intolerances with Celiac. I can't eat soy or corn.

Also I'm pretty sure that there are a lot of false negatives with Celiac. I'd give going gluten free a chance; wheat is not easy for many people to digest even if there is no Celiac or intolerance to it.

Comment by Trudy on December 10, 2012 at 4:59pm

Hi Ncraig. I'm sorry you're having such a miserable time with your digestion problems. I have Type 1, Celiac Disease and slow digestion. The best book I have ever read re Celiac is "Celiac Disease, A hidden epidemic, rev. and updated", by Peter H.R. Green, M.D. Director of the Celiac Disease Center at Columbia University. I first read it as a library book, then bought my own copy. I highly recommend it for general knowledge and maybe finding something helpful.

For the Celiac, I eat gluten free of course. I tested negative for it also, because using an elimination diet, I figured out that I had the problem and stopped eating gluten for some months before the test. It takes a long time, weeks or even months, for your gut to completely recover from all the damage after going gluten free. During the recovery time, I'd try to eat foods that are easily digested, not much fiber.

For slow digestion I take Hcl-enzyme pills with meals, usually eat 4 smaller meals rather than 3 large ones. When I first started having the slow-digestion problem, I had a lot of soups and liquids until my stomach started feeling better. Slow digestion can progress to Gastroparesis; mine has not done so. We do have a group on Gastroparesis.

Thanks to diabetes and some of my medications, I have to deal with constipation; psyllium husk capsules take care of the problem.

Good luck! Trudy

Comment by Ncraig on December 8, 2012 at 9:33am

Hi there,

Feeling confused and looking for some advice/suggestions. I was diagnosed with type 1 seven months ago at age 22 and things were getting under control for the first 3 months. But about 4 months ago I started having digestive issues. it's kind of embarrassing to talk about this but I'm looking for some relief. So here's my long story...

In July I started having diarrhea and went to my general doctor, he told me I had a stomach virus and that was that. So I carried on and kept getting the symptoms randomly. I was having D and very low abdominal cramping. Along with leg cramping. After the bowl movement, I was getting dizzy and a terrible headache that wouldn't go away until I went to sleep. And when it was D I was having constipation as well. The symptoms started happening more often to the point where I was having to miss work. To make matters worse I was living out of the country at the time and so I emailed my endo back in the states and she said all my symptoms sounded like celiac or gluten intolerance and to give me some relief to try a gluten free diet until I get home. So that's what I did. That was in October when I moved back and went on the gluten free diet just to get back home. I was on a gluten free diet for 2 weeks and then had the celiac blood work panel done. The results came back negative. However I was still having the lower cramping and headaches, and not normal bowel movements.

My doctor suggested I go to a GI doctor.I couldn't get in for a month and so I stayed on the gluten free diet since some of my symptoms had gone away. I also decided to take dairy out of my diet. After about a month and a half of gluten free I was able to see the GI doctor who told me I needed to eat a piece of bread for the week leading up to the upper endoscopy. So that's what I did, ate the bread and started having leg cramps again. I had the endoscopy and the celiac once again came back negative. He told me that he found my stomach was full and had me do a delayed stomach emptying test. Which I did, and it came back as true, yes my stomach delays emptying. My GI doctor however hasn't been much help since letting me know I don't have celiac and have a delayed stomach issue. I am still eating a gluten free/dairy free diet but the lower cramping, constipation, and headhaches haven't gone away. The cramping isnt terribly painful, more of a dull ache that is always there. More uncomfortable than anything. At this point I'm just confused and was hoping someone could relate. I guess my question is, could it be a false negative? Or how long after going gluten free do your digestive issues go away? Any help/advice would be much appreciated. This has been a whirlwind and while I'm trying to stay positive I feel like the medical professionals haven't been much help to me. Thank you so much! Again, sorry for the lengthy story!

Comment by Sheila Fitz on November 4, 2012 at 7:22am

Heather, I just want to add that for years we dealt with extreme food allergies in my family, especially to grains, but I could not get compliance from my dd. Fast forward to the past five years. She developed seizures and constant migraines. I begged her to go gluten free just because it would do no harm if it worked. It worked.
We are Irish Americans, so I decided to get some genetic testing done for the benefit of my grandson. Most of us had negative Celiac serum testing through the years, but now I know that the testing accuracy has a lot to be desired. Both my dd and I had a DQ2 gene. Then, a couple of years later, I developed a severe thirst and other symptoms of diabetes. I brought it to the Endo with my genetic tests. He tested my GAD65 antibodies and other things. I was LADA. So, I probably will never know if I am truly Celiac or just have the gene because I immediately stopped all grains and eat very low carb.
So, all I'm saying is that my family went for years thinking we were only allergic to wheat and corn. Allergies are autoimmune, too. It is difficult to tease out what caused what. You can be both.
My dd is now 38yo. She remains gluten free. I still have some pancreatic function after three years of low carb/gluten free.
One of my other dds has recently gone gf because she has a rash that seems to have been caused by gluten. Be careful of baby formulas. There is corn in most gluten free products. I cannot tolerate any form of corn. The Gluten Free Society includes corn in the "no list."
Just my story.

Comment by Trudy on November 4, 2012 at 4:06am

PS. Well, some French Fries, not all, have wheat! Gravies and sauces are usually thickened with wheat flour; at home, arrowroot flour works well. Most health food stores are a good source for foods you can use.

Comment by Trudy on November 4, 2012 at 4:00am

Hi Heather. I'm sorry that your little one has these allergy problems, but the good news is that you caught it early. I'd suggest the magazine Living Without for really good advice and recipes; their website is

I'd also avoid rye and buy only oats that are labeled "Gluten-free", such as Bob's Red Mill sells.

One problem that just recently cropped up, which you have probably heard about, is arsenic in all rice. The article in Consumer's Report magazine goes into detail. I would avoid all rice, rice flour, products with rice-syrup for sweetener on the label, until such time as the FDA puts limits on the amount of arsenic acceptable.

My suggestion for cereals for your little one is Cream of Buckwheat, gf oats and quinoa. f you bake, many of the gf cooking/baking websites are giving recipes containing almond flour/meal and coconut; sorghum is a favorite of mine. This elimination of rice has made baking edible foods difficult. However, wheat is much higher in carbs than almond meal and coconut.

Also beware of everything in a restaurant; wheat is in so many places you wouldn't suspect, such as French Fries. Of course that does leave vegetables, fruit, meat, fish, poultry, etc. Best of luck to you!

Comment by Heather-E on November 3, 2012 at 5:57pm

Hey everyone, I have not tested positive for Celiac Disease but my 9 1/2 month old was just diagnosed with wheat and barley allergies so our house is going wheat/barley free. I am hoping some of you may be able to offer some tips or advice on how the GF products might affect my BS differently (I am type 1 on pump) and hopefully you can recommend some good products or recipes that I can try that are better choices for me as someone with diabetes. (I live in Canada so products I can get here would be extra helpful lol). Thanks all :)

Comment by Judith Lawrence on July 18, 2012 at 2:31am

In regards to cereal and diabetes...some celiacs have trouble with all grains and their diets need to be even more limited. I also cannot do cereal in the morning or I'm slumped over all day with really high numbers but I can eat a small bowl in the evening with no effect. As a matter of fact...I have pretty much eliminated ceral atlogether...same with bread. I do occassionally make gf pizza but still shopping around for the best one.

Comment by Judith Lawrence on May 2, 2012 at 10:05pm

I'm no expert and just learning about Celiac although I've been sick for yrs. But as I get better at the whole GF diabetes numbers are excellent. Doesn't even look like I have diabetes anymore if you look at my numbers! My Celiac symptoms were so bad that the peripheral neuropathy in my head and numbness in arms and legs were out of this world. I have slight symptoms late at night...weird I know..but other than that, things are much improved. Gluten Free is doable, don't lose hope. Just embrace it.


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