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

[hotincleveland]

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.

[varthurs]

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.

[Skylark]

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.

[Jsny1010]

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

[hotincleveland]

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.

[hotincleveland]

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

[Skylark]

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.