Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

What Testing To Request?
0

4 posts in this topic

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.

0

Share this post


Link to post
Share on other sites


Ads by Google:

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!

1

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,344
    • Total Posts
      920,486
  • Topics

  • Posts

    • What's an " iodine test"?  Haven't heard doctors doing that to diagnose DH.
    • Hello! I've just been given my blood results and told they are highly suggestive of coeliacs but will have to wait till next month to see the gastroenterologist and who knows how much longer for a biopsy. My igA, igG and tissuetrans igA were all over 250 and tissuetrans igG was the only one that was normal. These results don't mean much to me yet but I'm told they are very high. I'm now quite fearful of how much damage I've gone to myself. I've had stomach problems for 25 years (just turned 40) and have often steered clear of too much bread and pasta for how bloated it made me feel but the symptoms were always vague and inconsistent so I kept eating. I had a couple of boats in the past few months (thanks kids) which I took a lot longer than normal to recover from then last Friday I had a blowout with wine, cheese, crackers, pizza and chocolate cake. I'm sure I've probably had blowouts like that before but I have never felt so sick before and am still slowly recovering. This is what finally prompted me to go back to my GP after being fobbed off so many times over the years. So I guess my question and my concern is whether there is still  chance of a false positive with levels like this? I worry what else it might be if not coeliac. I'm also worried that I may have done so much damage to myself that I will have several disorders going on! Thankyou!!    
    • Here's what the Klondike Bar makers say on the FAQ page of their website (August 2016): Are your products gluten free? Nope. They are not. We have not validated for gluten free. We do not operate allergen-free manufacturing sites, however we do have allergen management programs in all our facilities. The intent of these programs is to avoid unintentional cross-contamination of allergens between products. Our product labels adhere to the FDA’s strict regulations regarding declaration of ingredients and allergens. We do not use the terms “Natural” or “Artificial Flavorings” to hide the existence of any allergens. RECIPES CAN CHANGE. We strongly recommend that allergic consumers refer to ingredient declarations EVERY TIME they purchase processed foods.
    • I tried the iodine test but couldn't leave it on very long because it itched too much. I left it on maybe 30 minutes lol. Did anyone try it and have the same response??
    • Had my scope today. Dr said my esophagus is damaged and stomach inflamed. Waiting on biopsy results. Taking protonic and flagyl and he said to go ahead and try cutting gluten out to see if that helps. Thanks for the feedback everyone! 
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,414
    • Most Online
      1,763

    Newest Member
    Vic40
    Joined