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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 FREE Celiac.com email alerts   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 Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

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Hello,

my 7 month old son K has celiac ds, even though his GI doesn't want to say it right now, she says K is at "risk" for celiac, but to me it is obvious.

Here is our story...K started out great, first 4 weeks were wonderful, then fifth week fussing with breast feeding, had some signs of silent reflux and dysphagia and kept getting worse with refusing to feed, by third month had developed complete feeding aversion.Breast fed exclusively for almost 6 months, where I could feed him only in his sleep as he refused to feed while awake.Between 4-6 months he gained some wt but not height.At 6 and half months had endoscopy, showed gastritis and mild duodenitis with patchy and "mild" villous blunting.we were admitted to hospital at 7 months age for NG tube placement and feeding because he won't take bottles and we wanted to try and hold the breast feeding and see how he does, we had tried for bottle for months and months with no success...anyways, so third day of being NG tube fed the hypoallergenic formula [elecare] he started demanding bottles like someone flipped a switch...he was hungry and wanted to drink his bottles...huge relief for us, we were sooo happy . during the hospitalization also found out that his IgA levels are undetectable and his serological tests including the IgG based one were negative....I was so sure that his symptoms were all from milk protein allergy and thought celiac was a long shot as no one in family has it....boy was I wrong, 1 week after our discharge from hospital found out his HLA typing shows presence of DQ2 and DQ8.

So combination of IgA deficiency, abnormal biopsy and positive HLA typing is a clear celiac ds to me but his GI doesn't want to diagnose him yet, just wants us to be gluten free and go from there.

What do you all think?this is celiac ds, right?

Also since then he has gone downhill some and is fussing again with bottles, I got rid of the prevacid solutabs since it has some milk protein or lactose or something in it and also got rid of gelmix that we were thickening the formula with [gelmix has maltodextrin] no change so far and he has a painful rash around his butt and groins which indicates that he is not tolerating something....I thought elecare is the answer for now...but is he not tolerating that?

Any babies with celiac here?I am just having a hard time with this, feel like I am drowning the more I read about this...

sorry so long, if you read so far, thank you so much and looking forward to some input from the experienced parents here.

Mona

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Celiac is likely, but casein (milk protein) allergy will also cause villous atrophy. From my experience, the two often go hand in hand anyway.

Can you try nursing yet, or has your milk dried up? I would be curious to see how he did nursing if YOU were gluten and casein free.

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Hi Mitzi

Thank you for your reply. I was on TED while breast feeding or so I thought, we are Asian Indians and I was consuming spices and flours ( sorghum, millet) from Indian store which there is a high chance they are gluten contaminated. I am pumping to keep my supply and want to breast feed after being completely gluten free which will be 4-6 more weeks since I did consume all allergens on September 26 th.

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What is TED? Hopefully your allergy-free diet will allow you to nurse him! I wish I had more suggestions for you.

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TED is total elimination diet, at one point I was only on rice, squash, zucchini, olive oil, black pepper but it lasted only 4 days as I was losing my milk supply.....gosh this is hard and just wanted to get some perspective how moms of babies this young cope with this stuff.....

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    • Yes you are correct. Interestingly my genes in the US are thought to be more associated with RA. Which is something they thought I had prediagnosis. In the Middle and far East they are more likely to be associated with celiac and they are rare genes in Caucasians which I am according to my parents known heritage. I always caution folks not to take the gene tests as absolute proof they can't have celiac because I had one child who had positive blood and biopsy, did well on the diet, then got genes tested in young adulthood and was told they could never be celiac. Of course that resulted in her abandoning the diet. I worry but hope someday doctors will realise we still have a lot to learn about the genetics of this disease. PS While I still have some deformity in my hands my joint pain resolved after a few months on the diet.
    • It seems like you really need a concrete or near concrete answer so I would say maybe you ought to get the gene testing. Then you can decide on the gluten challenge.   Thanks! I am convinced our dogs are there waiting for us. Meanwhile they are playing, running, laughing, barking & chasing. I have another favorite quote dealing with dogs: "If a dog will not come to you after having looked you in the face, you should go home & examine your conscience."  ~~~ Woodrow Wilson ~~~
    • I can't help thinking that all of this would be so much easier if the doctor I went to 10 years ago would have done testing for celiac, rather than tell me I probably should avoid gluten. He was looking to sell allergy shots and hormone treatment, he had nothing to gain from me being diagnosed celiac. I've been messing around ever since, sort-of-most-of the time being gluten free but never being strict about it. I really feel like three months of eating gluten would do my body a lot of permanent damage. I've got elevated liver enzymes for the third time since 2008 and no cause can be found which might be good, I guess. I wonder if it would be reasonable to do the HLA testing first, to decide if I really need to do the gluten challenge. If the biopsy is negative, that is. Squirmingitch, love your tag line about dogs in heaven. We lost the best dog ever last December. I sure hope all my dogs are there waiting for me!
    • Most (90%-95%) patients with celiac disease have 1 or 2 copies of HLA-DQ2 haplotype (see below), while the remainder have HLA-DQ8 haplotype. Rare exceptions to these associations have been occasionally seen. In 1 study of celiac disease, only 0.7% of patients with celiac disease lacked the HLA alleles mentioned above. Results are reported as permissive, nonpermissive, or equivocal gene pairs. From: http://www.mayomedicallaboratories.com/test-catalog/Clinical+and+Interpretive/88906  
    • This is not quite as cut & dried as it sounds. Although rare, there are diagnosed celiacs who do not have either of those genes. Ravenwoodglass, who posted above, is one of those people. I think she has double DQ9 genes? Am I right Raven?  My point is, that getting the gene testing is not an absolute determination either way.
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