Do you have celiac? Introduce yourself!

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.

I don't log in often but I noticed alot of people with Celiac have similar stomach issues to me. For ten years I suffered, with 4 bowel obstructions, etc..before diagnosis. I also decided on my own that I probably suffered from leaky gut. I had MS like symptoms in my arms and legs. And yes, there is a gut brain connection. I researched and found out that L-glutamine was recommended for MS and leaky gut. It's an amino acid. Within 3-4 weeks I realized that I wasn't spending all my time in the bathroom or looking for the closest one. So, after 10 yrs, I am getting back to living again. The numbness in extremities is also getting so much better, stomach pain gone, and I hate to jinx it but...the dreaded brain (dis)function seems to be gone as well. I'm laid off for the winter and I'm home eating well and resting and my stress level is also diminished which is probably helping out as well. Just a suggestion...research it for yourself.

Is it common for wheat/ gluten avoidance to improve insulin sensitivity? Tests normal, and doc of the opinion that the reverse is seen in intolerance or celiac - i.e. cut out gluten, more nutrient gets taken in, more insulin needed.

If you stay low carb, you can keep your insulin lower.

Was similar/ same amount of carbs - different source. Of course a lot of wheat products (bread, and pizzas) can be fairly high GI, so not simple...

My identical twin has celiac but not diabetes. I was advised to go off gluten, so I did. I like it because, if I stay away from the highly process gluten free foods, my sugars and my energy are a lot better. Always on the lookout for good new recipes w low GI. Anybody out there have some resources they especially like?

Hi Kimball. Yes, it is a problem that many non-gluten foods are high carb. Resources that I use are: http://www.livingwithout.com/ and www.yourlighterside.com and www.elanaspantry.com. Those sites have meals and dessert recipes. Baked food with almond flour and/or coconut flour are low GI. Sorghum flour works a lot like wheat and I like the taste; I stay away from rice flour. Hope that helps -- good luck!

Thank you Trudy, I’ll look into this…

Hi Everyone. I've been having an issue and I don't know what to blame this on. I have been a diabetic for 47 years and a year ago was diagnosed with celiac. So I go on the celiac diet and I am very strict about it probably because I was sick for about 2 years and lost weight like crazy. So I finally get to feeling better and things are going pretty well. Then right after Christmas, NO cheating all throughout, mind you, and now I have had explosive, watery stools every day. So is this another celiac thing or something they call diabetic diarrhea? I've never heard of dd until recently so I really don't know. I've also taken myself off dairy as that seemed to be causing an issue. So now I'm taking Immodium to try to stop it, which does work but it's always back in the morning. Do I go back to GI -and they really know nothing about celiac, so I'm not thinking I'm going to get any info there. Or is this a diabetic thing? Please help!Stomach is back to hurting, the big D's back - only different. Any knowledge of what might be happening?

Hi Laura. What you describe sounds just awful. It seems to me that you might have to see a gastroenterologist and perhaps someone who can test you for more allergies. At the same time that I got Diabetes and developed Celiac Disease, I also became intolerant of corn, soy and some tree nuts. There is also a lot of hidden gluten in medications and foods. Shopping takes me so long as I check label after label... Good luck!

Hi Laura, When I developed as you say explosive watery stools it turned out I had a giardia infection, so get your stools tested. I've no idea where I caught it as I don't drink out of mountain streams or puddles. This could be caused by any number of things so go see the doc & get your stools tested.

Hi Laura, have you thought about any other intolerances causing your symptoms? I've been on a gf diet for 13 years, and I find that I have a gluten like reaction to soy products. Some people are also lactose intolerant. Other things I would consider are if a condiment or butter got cross contaminated somehow or if one of the food brands changed ingredients and you didn't realize. I have done this accidentally before. Just some thoughts!

Hello, all! Celiac has been ruled out, but non celiac gluten sensitivity and lactose intolerance have been dear friends of mine for years now. Avoid corn, most coconut stuff, most citrus stuff as well. . . It drives my family crazy, but I’m thrilled to eat whatever doesn’t leave me curled up in the bathroom for extended periods.

Hello everyone I'm new to this group it is wonderful you have this group i was dx a few months ago right after i was dx with T1. it has been easy for me eating gf but not so much for my husband. he doesn't fully understand everything yet. he thinks as long as i don't eat bread it ok. but i also try to explain gluten contamination. It is ok he will hopefully understand after awhile.

Hello, I have had type 1 for 26 years and was dx with celiac last week. Not having too much difficulty cutting out the gluten in obvious foods, but its hard to read all the labels with an 18 month old and a 4 year old running around the grocery store.

My two older dds follow a gluten free diet, as do I, only because I don't eat grains and starches. They find it easier to just eat whole foods. There are a lot of carbs hidden in gf products to make up for the gluten. I've been on a Celiac list for years, and the most common complaint is weight gain. When you free up the battened down villi, your absorption is increased for all the good things like vitamins, but also for extra calories. One thing to remember though, if you eliminate grains and there is any possibility of conception, take Folic Acid and B-12. That is another bag of worms - Many Celiacs frequently cannot process the form of B-12 that is most common because there is a percentage that have the MTFH????__gene. So, in short, they use lettuce leaves, swiss chard, etc to wrap sandwich fillings, as well as corn tortillas. I would go to a health food store for gluten free tortillas. I eat flaxmeal muffins. The origninal recipe is an Atkins variety on the internet as MIMs, muffin in a minute - in the microwave. I have the gene common to Celiac and LADA.

Does anyone have any info to share on diagnosing celiac disease? My 10 yr old son though showed no symptoms was tested and found to have a slightly elevated transglutomase number. the docs group wants my 10 year old to see a pediatric GI to do a endoscopy to diagnose if he really is positive for celiac. I don’t want to put him through this test when he has no symptoms and the current test does not mean for sure he has celiac.
Will it do long term damage if we don’t go gluten free if and until he has symptoms?
Thanks!

LBD: My understanding is that symptoms don't correlate to damage done by celiac and the risk for later complications. Meaning, that if your son does have celiac, damage is being done to his GI track even if he doesn't have symptoms. Don't take my word for it, but that is my understanding. My son went through an endoscopy at age 4 that confirmed celiac and he has been gluten-free since. The endoscopy is no fun but going gluten-free is a serious lifelong commitment. I didn't want to sign my son up for that unless it was absolutely necessary. Best of luck to you and your son.

Hi LBD. I agree whole-heartedly with svenmint. I believe I had Celiac all my life, and that it did indeed do damage. The symptoms became apparent when I was also diagnosed with Type 1 at the age of 63.

If you decide that your son should go gluten free, I would recommend looking at the discussion above, "Another Gluten Free site". I just looked at that site, and they have a section for gf kids: http://www.glutenfreepalate.com/gluten-free-kids/ Looking through the entire site, I downloaded her Gluten Free Flour Blends, Pumpkin Pancakes, and Chocolate Chip Peanut Butter Cookies for us! Her recipes look fairly low-carb to me. Buying bread, pizzas, etc. at the grocery store (with higher carb), I like the Udi brand. Best wishes to your son.

I haven't told this story for awhile.
I was diagnosed with T-1 in 1971. In 1992 I was diagnosed with DH by my dermatologist so he said I would have to take Dapsone for the rest of my life. The blisters got worse and my diabetes got completely out of control. There was this artice in Diabetes Forecast entitled "wheat is your problem." I immediately went on a g/f diet and the DH diabetes started acting normal, but I ddi go to a GI doctor.
Since we are talking about our diet. I stayed on a strict g/f diet for at least 3 years and in the mid 90's I called Budweiser & asked them if they would ever make a g/f beer. "our beer is g/f, it is made from a rice grain & the barley that is used in brewing is turned into amino acids & our specialist's are unable to detect any gluten." I asked them to send me this in writing and they did, so I have drunk a lot of their beer over the years. One time in Paris we had been riding this tour bus and waiting in traffic most of the day, so when we finally got off a Subshop was nearby and I ate one of theit subs & it didn't bother me. I have had at least 4 endoscopys since I have had CD or at least was diagnosed with CD. On the first one after I went to see a GI doctor, he said I was his first patient with CD, but he surmised after looking at the results. "you probably have CD after reading the article you brought me." The others was done at a clinic in Charleston & on the last one I also had a colonoscopy and he said "I will see you in 10 yrs." I am 74 now and other than the beer I do stay on a g/f diet. The CSA claims all beer has gluten in it? Most people don't believe this so I have had many arguments over the years.