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Diabetic And Celiac Disease Daughter


leivasfamily

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leivasfamily Newbie

Hello All,

I have a 19 year old Downs' Syndrome daughter with hypothyroidism and who last August was diagnosed with Type 1 diabetes and just days ago diagnosed with Celiac Disease after 3-4 months of being Iron deficient, B12 anemic, Vit D deficient, Calcium deficient, amenorrhea, swelling of ankles and legs, hair loss, Low TSH levels, Low Albumin 1.8, fatigue, and moodiness.

Trying to find a good website to find information for food ideas for diabetics and celiac disease. Her diet has always been good, but now adding the celiac disease to the mix, it's going to be a lot tougher.

Also looking for a support group in Murrieta or Temecula, California area.

Any wisdom any of you would like to share that relate to my daughters condition, would be greatly helpful.

Thanks much!


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WheatChef Apprentice

Unfortunately all 3 of those conditions have a high likelihood of occurring together, enough so that it's normally recommended that everyone with either type 1 or down's syndrome get tested for celiac's disease. On the bright side however, many people with celiac disease end up adopting a high fat, low carb diet (since we can't have all those breads anymore) which is the best possible diet for dealing with diabetes. Definitely try and avoid most of the gluten-like replacement foods (such as gluten-free pastas, brownies), while these wouldn't be the best for someone with diabetes in the first place, the gluten-free replacements are usually jam packed full of even more sugars than are in the normal type.

missy'smom Collaborator

I highly recommend a low carbohydrate diet specifically designed for those with diabetes. Dr, Richard Bernstein has T1 and has developed a diet that is compatible with being gluten-free. There is a forum set up for support and several parents with T1 kids and a doctor or two with T1 kids who are members. There is also a monthy webcast where Dr. Bernstein graciously takes his time to answer many many questions that are mailed in.

missy'smom Collaborator

Here's a link.

Open Original Shared Link

GFinDC Veteran

A healthy diet for her would be anything but wheat, rye, barley, probably oats, and dairy and soy also.

Lots of celiacs have or develop additional food intolerances besides gluten (wheat, rye, barley) and some 10 to 15% react to oats also. Kind a fuzzy number there but I don't remember exactly.

Other food intolerances we get are soy, nightshades (potatoes, tomoatoes, peppers) and eggs, corn, and dairy. Some people can eat dairy after a few months or more when they get their gut healed.

A good way to start the gluten-free diet is with a very basic diet of whole foods with limited spices, and no pre-mixed spice blends, sauces, or salad dressings.

Also no processed foods at all. Nothing in a box or can or with a long string of ingredients on the label. You can eliminate most all the potential food coloring and preservatives issues by sticking with whole foods.

Sticking with low sugar or no sugar is also good when starting out.

Some pro-biotics may help also and possibly some sub-lingual B-12.

Remember everything that goes in the body counts, including drinks, coffee, tea, soda etc, medicines, vitamins etc. Some people buy gluten free shampoo also and get gluten free pet food.

Also watch out for shared condiments like jars of peanut butter that people who eat gluten use. the crumbs from a knife in the peanut butter or mayo jar jar are all it takes to make a person sick.

Hellman's canola oil cholesterol free mayo is the only mainstream soy free mayo that I know of in the USA. It can be found in larger grocery stores.

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    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
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      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
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