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What Testing To Request?
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I was originally diagnosed with celiac disease as an infant 60 yrs ago. Raised for many years on a gluten free diet. My mother was told I had outgrown it and as foods were reintroduced in early teens appeared to not have many problems. In hindsight, I was classic celiac. Five years ago my symptoms were the checklist for every conceivable problem associated with celiac but doctors didn't come up with a diagnosis. I am a nurse and one night a doc who I work with was discussing all my issues and suggested...once a celiac,always a celiac. I googled celiac disease and was shocked at how everything fell into place including D.H. I immediately went gluten free. Most of my symptoms have greatly improved. My eldest daughter has been diagnosed as celiac as well as casein and soy intolerant by genetic testing. I have never had any testing done. I am very sensitive to gluten especially CC. I recently was staying with family for 4 months and was continually getting glutened.I suspect dairy and soy as well but just don't know. I will be getting health care coverage in a few weeks and would like to get some kind of testing done. I am not prepared to go back on a gluten diet to get a bowel biopsy done. I simply would not be able to function. What other testing should I be requesting? I have severe osteoporosis and take calcium,vit D and mag for that as well to control severe muscle spasms. I was recently losing weight rapidly from being glutened but now that I am in my own place, that is under control again.I have peripheral neuropathy in my hands and feet but it is not progressing and the ataxia is now stable. Avoiding gluten and my D.H. is under control. I know if I go back on gluten foods that I can trigger that and I guess they can test the lesions and diagnose me from that?? I feel I want to have an idea of what I am asking when I hit a new doctor. I have been diagnosed in the past with fibromyalgia and reflex sympathetic dystrophy but on a gluten free diet both conditions are much less of a problem and I almost hate to mention them. Should I be looking for a specialist( gastroenterologist) or can a GP work? Is this more an internal medicine thing??? Any suggestions are appreciated.

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If you were diagnosed as a child with celiac and have DH, you need no further diagnosis. Celiac disease is lifelong, and your childhood diagnosis is still valid. In fact, it means you have severe celiac as the disease is hard to catch in children and 60 years ago they were only diagnosing people who were very ill. You could do serious neurological damage to yourself with a gluten challenge. Please don't do that to yourself!

You need to have your thyroid tested regularly, and vitamin levels followed including B12. You also need to have the bone density checked to see if you're incorporating the calcium and D. With the neurological problems you may be B6 and/or B12 deficient. You can ask for allergy tests for dairy and soy, but it may be easier to eliminate them and see if you feel better as the tests are not very accurate.

Good luck!

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Thanks Skylark. I will get the vitamin and thyroid levels you suggest checked. I am afraid a doctor may question my celiac dx as it has never been confirmed, at least by any of the modern standards. The dx of DH was another of those night time consults of a doc saying sure looks like it and giving me Dapsone ointment when nothing else would clear it up. It reappears whenever I have had a bad exposure to gluten. I seem to be more and more sensitive to any exposure to even trace amounts of gluten. I will also ask for the dairy and soy allergy tests as my daughter's tests with enterolab came back with cassein and soy as culprits for her as well as gluten. Thanks for the info. I sure am not going back on gluten for anyone to prove I can't tolerate it.

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Your doctor does not have your childhood medical records and there is no sense in confusing the issue. Unless you really want the DH biopsied (and I don't see why you'd want to go through that) tell him it was a firm diagnosis. You can explain that there is a lot of damage and severe osteoporosis because the unfortunate standard of care back then was to try to reintroduce wheat to childhood celiacs.

With the casein and soy, we tolerate it worse when there is villous damage. Damaged villi don't break proteins down very well so larger bits of immunogenic peptide are left. There can also be some cross-reactivity between casein and anti-gliadin IgA. As you heal up after your recent gluten exposure, digest proteins fully again, and the anti-gliadin IgA goes away, you may find that you tolerate casein or soy again. That intestinal IgA Enterolab tests for actually comes and goes as part of normal immune function much like IgG to foods can.

My story is so much like yours. They suspected celiac when I was an infant and then switched to wheat allergy. I was raised off wheat but eating some rye and barley, having stomachaches, and taking a lot of bentyl. I was put back on wheat as a teen and seemed to tolerate it but by my late teens I had "IBS" and hypothyroidism and in my early 20s I had a flu and the chronic fatigue, "gastritis", and depression set in. I self-diagnosed five years ago at 36 years old when I went on an elimination diet out of desperation. My doctor said he'd test if I wanted to gluten challenge but he said the tests aren't very good and that my response to the diet was more diagnostic. Since then, I just tell docs I'm celiac. It's much simpler.

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    • Thank you everyone! Good to know I am not alone with this. I am asking for a referral to a new cardio. Hopefully it will all go away the longer I am gluten-free. It started up in February/March after a gluten challenge and mostly vanished until July when I had a lot of shortness of breath. It absolutely was CRAZY just a few days after the glutening. I was gasping for breath and the beats were all over the place just walking through a parking garage and I was only mildy anemic at the time.   But it seems to "quiver" and do funny things for a bit still. I sort of theorized maybe it was inflammation in the heart because after this last glutening, my head felt like it was in a vice and my eyes would sting or get stabbing pain hurt (that is finally going away thankfully...knock on wood).  The head/eye pressure I learned also happens to my sibling who has celiac and his naturopath told him that sometimes the brain gets inflamed. Hopefully I can meet the new cardio soon and feel confident that he is taking me seriously. It is sort of difficult to feel confident in the opinion of a doctor that your ticker is ok when they are not really listening and end up making you cry. LOL. A friend of mine in the mental health field recently listened to my story of doc after doc and test after test and said that it was akin to the folk story of blind men describing an elephant. A group of blind men all feel one part of an elephant (tusk, tail, ear, tail) and then compare notes only to find they all disagree.  In some  versions they argue intensely. In other versions they have to collaborate and listen to each other in order to "describe" an elephant.    
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