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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

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My daughter is 15 and has been having extremely severe pain on the right side up under her rib cage and along her shoulder blade on same side. She has had tons of ultrasounds and xrays and a hida scan to rule out gall bladder. She has also been nauseated and is underweight. Finally, she had an endoscopy done done Oct 4th and tons of bloodwork. The DR visibly saw and I qoute "severe blunting of villi in duodenum and bulb". The actual biopsy came back negative as well as all the other bloodwork EXCEPT DQ2. That was positive. Does she have Celiac or not???? DR says no. I also have thyroid disease and sjogrens disease. With me having two autoimmune diseases, I very well could have an IGA deficiency. Could my daughter also have this deficiency which would make her bloodwork a false-negative? Thanks in advance for your help!!!!

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She certainly could have Celiac Disease.

Do you have her Celiac Antibody Blood test results? If you post them here we can help interpret them - same goes for the biopsy report - it is helpful to know how many samples were taken and any language used to describe them.

Have you been tested for Celiac Disease? It is genetic, tends to run with other AIs and does not always present with gastro symptoms. Your daughter received the DQ2 gene from either you or her father.

Full Celiac Blood Panel:

Total Serum IgA

Tissue Transglutaminase IgA and IgG

Gliadin IgA and IgG

Endomysial Antibody IgA

Deamidated Gliadin Peptide IgA and IgG

Also, low vitamins/minerals can indicate your daughter is not absorbing nutrients properly - another indicator of Celiac Disease. So you might want to make sure these were checked:

Bs, D, K, Iron, Ferritin, Copper and Zinc

Good Luck to you and your daughter!

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No, I have not been tested yet. I will be in the near future. I do know that they took one biopsy from her stomach to rule out h pylori and only two!!!!! from her duodenum. That realy shocked me especially with him saying severe blunting. No, I dont have any of the numbers on the blood tests, but I do know that she didnt get the total serum or the deamidated gliadin. I am also worried that she only weighs 102 and should weigh about 125. This is just so frustrating!

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Yes, Celaic testing can be incredibly frustrating. It is good that you are questioning her results - far too many are told that they do not have Celiac Disease only to cause far more damage to their health.

I would make sure she gets the rest of the blood tests - your primary should be able to order them - then remove all gluten from her diet for at least three months (six would be better) as the complete elimination of gluten is often the best test. 15 is a tough age...some teens don't want to remove gluten, while others like your daughter are often ready to see if a dietary change can make them feel better.

Get yourself tested too and then join your daughter in the gluten-free trial - removing gluten may improve both your Thyroid and Sjogren's symptoms.

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since the doc said no celiac, what the "heck" did he say caused the blunting?????

My point exactly!! Also, no h pylori was found, no ulcers...... I am going crazy and confused.

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You can have the slides reevaluated for free somewhere else. I can't remember where but maybe someone here can help. My daughters biopsy showed "simplification" and didnt use the word blunt. Make sure you get the report and then I'd send it to a celiac center for a 2nd opinion since he saw it!!!

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    • Thanks for all the input guys. Yeah I've had the vit/min panels and all that done and it was all normal. Regardless I've been supplementing with 1,000mcg sublingual B12 daily, 5,000iu sublingual D3 every few days, and since going keto, "ketovitals" which gives me some magnesium, potassium, sodium, and calcium. Also douse everything in pink sea salt and drink a ton of water. For months now I've tended to get at LEAST 10 hours of sleep per night... Usually. I still at times have terrible insomnia, which is what happened the other night, then had to get up early. Got a total of maybe 5 hours and still feeling it now 2 days later despite sleeping closer to 14 hours a night since. So Ennis, you mentioned about lectins, which I'm now reading about, and interestingly, certain things I don't do well with (usually uncooked veggies, aside from onions) seem to correspond to this. I even do fine with peas, but, I cook those. I'll have to start experimenting. The only part that gets me is that I'm reading grain-fed meats are high in lectins. I've read before that the supposed grain/grass fed difference is BS, and in fact the one thing that has never let me down through all of this is chicken, and I just buy the regular stuff for that. Can anyone confirm or debunk?
    • At 6. Months I was still recuperating for sure. Still had the dh but less of it, still had chronic pain in my abdomen but less of it, still constipated. I was in the stage of eating gluten-free processed foods, which was too much gluten for me, and keeping my symptoms active. In all actuality my C stopped a few months ago. I've been gluten-free for almost 10 years now.
    • 6 months for me stuff was still iffy. I was having bad days good days wtf days. Seemed like ANY change and my body threw a tantrum like a little kid. Yeah sleep patterns lol. I STILL CAN not change them I HAVE to go to bed at a certain time and WAKE at a certain time (9pm-4am)or my cycle goes all out of wack (also take a mid afternoon nap) , the entire day becomes ruined. Meals are the same way. There is this like 30-60mins window if I miss this shot my body goes all kinds of wonky. Mostly it become anemic and my got shuts down and constipation sets in. Always have to have hot fluids or this happens also.....no more cold drinks lol.

      EVEN if your levels are fine, supplementing is something many of us HAVE to do. For me I do not feel "Normal" unless I take my B-vitamins etc. Heck if i miss my magnesium supplement I block up, stop stomach emptying, get cramps, and generally vomit after day 2 if I eat anything. Supplementing is the new "Normal" for me.

      Still to this day food diary shows ups and downs with certain foods, I can not eat many foods, and others HAVE to be prepared in a certain way. heck up until recently I assumed it was a histamine issue or mast cell. Then I found some high histamine foods that should did not bother me go figure, then learned of something called Lectins and my prep methods that work with foods.....corresponds to lowering lectin content.....yeah SO I might have solved that mystery but am experimenting with it still.

      Health wise I am now doing much better and after 4 years found that "Perfect" diet plan for my body (at least for now). Putting on weight,  and trying to body build, still seems to yoyo with ups and days but less now.
    • Sorry to hear you are still suffering so. Have you had a vitamin and mineral panel done?  You should at least have your B12 levels checked. If they are not over 500 then try a subligual B12. That might help a bit.  I take a Stress B supplement but was able to drop the B12 after about 5 years. I know how hard it is to stick to a very regimented schedule as far as sleep goes. I suffer greatly if I don't retire and get up at the same time every day. I am trying to adjust my schedule a bit right now and paying for it. I have been going to sleep at 8pm and getting up at 4am now for a long time which cuts out any real social life.  The last few days I have stayed up till 9:30 or so and gotten up at 5:30 with a headache and generally feeling lousy.  I started getting up very early a few years ago so that I would still get enough sleep even if I have to be somewhere earlier than normal.  Is it possible to adjust your sleep schedule so that if needed you can be somewhere early and not have it mess up your system?  I try to wake at least 3 to 4 hours before I leave the house. It is amazing how much you can get done and how relaxed your beginning day is when you don't have to worry about having to get up early to accomodate an unusually early obligation. Please don't get discouraged. It can take a very long time to heal but for many of us we were ill for years before we finally got diagnosed. I hope you see more progress soon. Be patient with yourself as there are no instant fixes for us, unfortunately.
    • Celiac disease is a chronic digestive disorder in which gluten damages the small intestine. ... next to the dishes that are gluten-free, but how many Americans actually suffer from celiac disease, wheat allergy or gluten insensitivity? View the full article
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