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

Please Help - Endomysial Ab Iga Results - Should I Eat Gluten For 6 More Weeks Until Biopsy?
0

7 posts in this topic

I have been suffering with many things intensely over the past 5 years. I used to be fairly healthy except for chronic allergies and sinus problems, then suddenly I was hit with 60 pound weight gain, migraine, fibromyalgia, intense diarrhea alternating with constipation, depression, anxiety, arthritis, cancer, on and on. I've seen 9 specialists (including a GI) who never once suggested celiac. For what it's worth, my father became lactose intolerant later in life, had diabetes, got really fat, became bowel incontinent with diarrhea, then wasted away, etc. Looking back I think he was an undiagnosed celiac.

I read Dr. Davis' book "Wheat Belly," and avoided wheat for a few weeks. I felt generally better, then reintroduced wheat. Within 12 hours I had a migraine, and within 36 hrs. I was on the toilet at least 5 times with the telltale stool (you know which one I'm talking about.) I continued to avoid wheat and gluten as much as possible until my appointment, because I didn't want to get sick again.

I made an appointment at the Cleveland Clinic to talk to an Immunologist. (I didn't realize this was considered the domain of GI. It's an autoimmune disease, after all). She ordered a blood panel, which came back abnormal. (I'm mad, because I told her I'd been avoiding all wheat for 3-4 weeks, and she said that wouldn't influence the results. I didn't know if she was running a genetic test or what. Here it was the antibody tests, which ARE influenced by gluten consumption. Grrrr.)

Are these indicative of Celiac with a great degree of certainty? What about the fact I had been gluten-free for almost a month? Here are my results:

IgA - 138

Endomysial AB IgA - 1:20 - ABNORMAL

Gliadin IgG Abs - 14

Gliadin IgA Abs - 5

Transglutaminase - 14

Today I heard from the Celiac Disease Ctr (Chicago) via Twitter that no blood test will confirm Celiac, and that I will have to resume consuming gluten for a biopsy.

I couldn't get an appointment with the GI until the end of March (and that's just for the initial consult). I'm sure the biopsy would be another 3-4 weeks on top of the month I'm already waiting. I cannot stand the thought of dealing with this sickness for another two months.

I am so tired of not getting good information. Should I just tough it out, and keep eating gluten until I get the diagnosis verified and in writing? Are the "benefits" of documented disease worth it? Are there amounts I can eat that will get the positive results without sending me into feeling like death? I'd appreciate anyone's advice, experience with these lab results, and most of all, the name of a good doctor in Cleveland. Thank you! PS - Nice Domino's Pizza banner ad on the left. :-< Sheesh.

0

Share this post


Link to post
Share on other sites


Ads by Google:

I can't wait to see what everyone says. I am waiting for my specialist appointment as well, all the while feeling terrible...I feel your pain.

0

Share this post


Link to post
Share on other sites

Endomysial IgA (EMA) is highly specific for celiac disease. I can't help you understand the rest of your tests because you didn't put the normal ranges.

The "gold standard" for celiac disease is both blood & biopsy. Thing is, EMA is 98% specific for celiac. Studies on the few EMA+, biopsy-negative people show that they have metabolic markers of celiac disease and tend to eventually convert to a positive biopsy. Even if you got the biopsy and it came back negative it would be safer to assume you're celiac and go gluten-free. After all, you don't want to make yourself sicker just because doctors want you half-dead with no villi and serious malabsorption before they diagnose.

You could ask for genetic testing to shore up the EMA. Problem is that you could get written off if you're one of the 1% of celiacs without a "celiac" gene. It's a bit risky because doctors can be so rigid.

A competent GP can monitor you for osteoporosis and deficiencies like B12, iron, and vitamin D, and the positive EMA should be enough evidence to get what labs you need. Whatever lingering conditions you have (likely hypothyroidism with the fibromyalgia) can be treated without a firm celiac diagnosis. I don't have a firm diagnosis and my doctors have advised me to avoid gluten challenging. They just aren't that worried as long as I'm not eating gluten and making myself ill.

The diagnosis gives you protection under the ADA on the off chance you might need it. Thing is, it's rare to get into a situation as an adult where you are looking for ADA protection over food. You just work it out or bring your own. That's mostly for kids in school. Some employers will let you use a flexible spending account for the added cost of gluten-free food. (i.e. if bread is $2 and gluten-free bread is $6 you can use flexible spending to get $4 pre-tax for the gluten-free bread.) If it happens that you have enough medical expenses to deduct (7.5% of AGI), the added cost of gluten-free food over normal is tax deductible as a medical expense. It may be that you could get a doctor to diagnose celiac for tax purposes without the biopsy anyway if you are looking to do the deduction.

I hope this helps you think it through. :)

0

Share this post


Link to post
Share on other sites

I agree with Skylark, my results were the same as yours - i stayed off gluten for over a week and felt GREAT, added gluten back into my diet and back to feeling sluggish and crummy. I didnt like the thought of changing my diet without a firm diagnosis at first but it is worth it to feel better, and hopefuly in 6 months i can have dairy again..

But to answer your question, if you stop eating gluten you will begin to heal and the biopsy could be negative... but these are just my opinion 5 years was long enough for me

0

Share this post


Link to post
Share on other sites

Endomysial IgA (EMA) is highly specific for celiac disease. I can't help you understand the rest of your tests because you didn't put the normal ranges.

A competent GP can monitor you for osteoporosis and deficiencies like B12, iron, and vitamin D, and the positive EMA should be enough evidence to get what labs you need. Whatever lingering conditions you have (likely hypothyroidism with the fibromyalgia) can be treated without a firm celiac diagnosis.

The other assays on the test were normal, under 20, which was the threshold for negative. This is where I think being gluten-free before the test hurt me.

My thyroid has checked out ok, but my iron saturation is weak (19%) and my Vitamin D was low ("4") before I started 50,000 IU a week, now 35.

0

Share this post


Link to post
Share on other sites




Also, for what it's worth....

A couple years ago during a routine physical, my C-Reactive Protein came back at .96 -- double the upper limit of .5

CRP measures inflammation in the body

0

Share this post


Link to post
Share on other sites

Gluten-free may have affected your other results; it may also be that the only one that would have ever been positive was EMA. You can't second-guess that. Four weeks is kind of fast for high antibodies to fall; it's possible you missed a low positive. You have to keep in mind that the ONLY way you could not have celiac disease (or at least be on the way there) is a lab error. Anti-EMA is that specific. Given your symptoms from gluten it seems unlikely to be an error.

Doctors are trained to see things, and to make as strong a diagnosis as possible. Labs can be wrong and doctors are trained to look and touch to verify the information they get through tests. You have to decide what you want from the biopsy. Are you going to go gluten-free anyway? Will you second-guess needing the diet? Is having a "gold standard" diagnosis worth suffering a little? It is for some people, not for others.

Unfortunately the biopsy looks for a lot of damage. There isn't a comfortable way to go back on gluten because if you only have a couple months the usual recommendation is 4 slices of bread a day worth.

Think about the genetic testing too. You might be able to get the immunologist or your GP to run the genetic tests. DQ2 or DQ8 along with the EMA would be pretty strong evidence for celiac.

I didn't even get blood tests; I figured out my celiac disease years ago before it was a fad and I didn't say anything to a doctor until I'd been off gluten four months. He told me I was probably celiac given all the symptoms that had resolved. (There was no such thing as gluten intolerance back then.) I had two choices, to gluten challenge and get tested or to adopt a celiac diet for life. I made it through one sandwich of challenge and thought to myself "the heck with this". A lifetime of problems going away off gluten and a sandwich making me sick was enough evidence for me. I realize now that a stunningly itchy, blistered rash on my hand another doctor couldn't explain was likely DH. It stopped recurring after a couple years gluten-free so I'm pretty sure I'm celiac.

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
      104,115
    • Total Posts
      919,447
  • Topics

  • Posts

    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
    • I'm glad I found these forums!  I will spend some more time this evening reading through them.  But I wanted to get my question out there just to see if anyone else might have answers quicker than I can sift through the forum for them.      I've been feeling terrible for about a year, and after an elimination diet last month, figured out that if nothing else, gluten/wheat is a problem.  After lots of research, I abandoned the elimination diet and added gluten back in, so that I could get tested for Celiac.   I was off gluten for 3 weeks, from mid-June until early July.  I've had it back in my diet for almost 3 weeks now.    My question is this: Since I was off gluten for 3 weeks, and now back on for almost 3, is that enough time on to yield a positive Celiac blood test, if that indeed is what I have?  All the research I've done says 4-6 weeks for a gluten challenge, but is that really necessary if I was only not eating it for 3 weeks?  I am desperate to get this testing done and over with.  I feel terrible all the time and getting through the day is a struggle.  My doctor ran allergy panels already and everything came back clear except for a mild wheat allergy.  So if nothing else, I'll have to give up wheat for sure at the end of all this.  I get the feeling she doesn't know a ton about Celiac though, so I'm doing a lot of the research on my own. Any advice or information would be so appreciated! 
    • Hi Michael, That's quite a spike in blood pressure!  I haven't tested that myself and don't want to if it means I have to eat gluten.  Blood pressure testing to identify food reactions is something that has come up before.  It sounds like it might be possible but I don't know how much study has been done on it.  Probably not much since it is such a simple, straight forward idea. Welcome to the forum!
    • Hi Megan, Did the doctor test you for celiac disease?  You really shouldn't go gluten-free until all the testing for celiac disease is completed.  It is a little odd for a doctor to tell you to go gluten-free for no reason IMHO.  Did he/she explain the reason for it? Personally, I have learned over the years what I can eat safely and what I can't.  Occasionally I get hit but it is rare.  Simplifying your diet is a good first step.  Avoiding processed foods for a while and dairy also is good.  I suggest any change you make last for a month at least. Then try the food again. If you are eating 100 random ingredients/foods each day it is hard to figure these things out.  If you reduce it to a much smaller number of foods then things become simpler. Welcome to the forum!
    • Finally, proof that non-celiac gluten sensitivity is real. ... for the 30 percent of consumers who choose to buy gluten-free products and the 41 percent of ... View the full article
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,154
    • Most Online
      1,763

    Newest Member
    calla84
    Joined