• Ads by Google:

    Get email alerts Celiac.com E-Newsletter

    Ads by Google:

       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      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.

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

7 posts in this topic

Recommended Posts

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.

Share this post

Link to post
Share on other sites
Ads by Google:
Ads by Google:

Skylark    935

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. :)

Share this post

Link to post
Share on other sites
Jsny1010    1

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

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.

Share this post

Link to post
Share on other sites
Ads by Google:

Skylark    935

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.

Share this post

Link to post
Share on other sites

Ads by Google:

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


  • Forum Statistics

    • Total Topics
    • Total Posts
  • Member Statistics

    • Total Members
    • Most Online

    Newest Member
  • Popular Now

  • Topics

  • Posts

    • Before ordering the endoscopy, you would think they would order the complete celiac panel.  Not all celiacs (like me) ever get a positive TTG (I do test positive to the DGP, but negative to the EMA and TTG).  You would think that the additional blood tests would be way more cost effective than going directly to endoscopy.  The endoscopy usually is still considered necessary for a celiac diagnosis, but there does not seem to be strong evidence that she has celiac disease other than a family history.   Some celiacs are seronegative negative, but your daughter was only negative on just one of the celiac tests.  So, she MIGHT be seronegative.  More investigation is needed.  She is NOT IgA deficient, at least for celiac testing (for celiac disease this test is just a control test).   The DGP test seems to be better for small children.   I do not have the complete health history of your child, but I would seek a second opinion before going to an endoscopy at this time with only one test result.  Try to find a celiac-savvy GI -- one who follows what the American GI Association  recommendations for celiac disease and what the Mayo Clinic or a large celiac research center recommends for testing protocol. https://www.mayomedicallaboratories.com/it-mmfiles/Celiac_Disease_Diagnostic_Testing_Algorithm.pdf https://gi.org/guideline/diagnosis-and-management-of-celiac-disease/  
    •   Hello linzk8! I would suggest you to go with natural foods as you are allergic to latex. One of my friends had the same problem. She also had latex allergic. She used Indian nuts to lose weight purchased from the official site of Nuez Dela India and achieved a success. You can also check the same. Eating at the right time is also important. Avoid eating very late at night. It's fine to eat in between meals, but limit your proportions. Never starve yourself! Hope this could help you!
    • My family visited Peru (my 13 year old has celiac) last Christmas, and we found Peru rather gluten free friendly. Peru is the land of corn and potatoes, and they have lots of grill meats.   Their cooking ingredients tend to be naturally gluten-free.   We did the 4 day Inca trail hike to Machu Picchu, and our chef did a great job making gluten-free meals for my daughter.  
    • Most physicians follow the joint commission’s guidelines on prescribing HTN medications which usually begin with a diuretic and calcium channel blocker (the amlodipine) - see below. Is it possible that your bp was still not controlled on the CCB (amlodipine)? So the ARB was added? Again, I’d just like to say that just bc a drug does have certain adverse effects does not mean you will have them, but I understand if you would not even want to take the chance, given a previous history of celiac disease. http://www.aafp.org/afp/2014/1001/p503.html “In the general nonblack population, including those with diabetes, initial anti-hypertensive treatment should include a thiazide diuretic, calcium channel blocker, angiotensin-converting enzyme (ACE) inhibitor, or angiotensin receptor blocker (ARB). In the general black population, including those with diabetes, initial treatment should include a thiazide diuretic or calcium channel blocker. If the target blood pressure is not reached within one month after initiating therapy, the dosage of the initial medication should be increased or a second medication should be added (thiazide diuretic, calcium channel blocker, ACE inhibitor, or ARB; do not combine an ACE inhibitor with an ARB). Blood pressure should be monitored and the treatment regimen adjusted until the target blood pressure is reached. A third drug should be added if necessary; however, if the target blood pressure cannot be achieved using only the drug classes listed above, antihypertensive drugs from other classes can be used (e.g., beta blockers, aldosterone antagonists). Referral to a physician with expertise in treating hypertension may be necessary for patients who do not reach the target blood pressure using these strategies.” Drugs for BP in different classes work by different mechanisms. It may be worth it to print out those huge, long drug information sheets and go over them with a fine toothed comb. As for CoQ10, have you checked for coupons online? Can your doctor write you an Rx and get your insurance to pay? They might say it’s on OTC and you have to pay out of pocket, but it may be worth it to find a way around that - would a prior authorization do the trick? I don’t know, just bringing up the questions. In the report you cited, these concluding words were to me, chilling:
      “Therefore, we suggest the possibility of a class effect.” Losartan, olmeseartan - doesn’t matter. And I'll say it again, there must be a way to disseminate this information more widely as I had no idea about this adverse effect, and never heard any docs speaking about it either. It really warrants wider sharing. Finally, one person who is often an overlooked resource is your pharmacist. They have just tons of knowledge and should be able to talk to you in some depth if asked, in an articulate, easy to understand way. They may even be able to do some digging and research for you. Plumbago
    • Plumbago et al, Thanks for letting me know  about the "artan" drugs being ARBs. I think Cyclinglady was right the Losartan research is not free and thus not public. I saw the link with no abstract but wanted to read it to confirm as you noted in your ETA that it was another "Artan" drug Losartan causing the problem. I believe it is. I found a great (after more digging) review of all the "artans"/ARBs or most of them about whether they can contribute to sprue symptom's in addition to Benicar. here on wiley as studied by the alimentary pharmacology and therapeutic journal (AP&T) for short. http://onlinelibrary.wiley.com/doi/10.1111/apt.14176/full I wish I knew how to post the able alone it is very informative.  Please scroll over the table to the end of it since it even tells how long to expect before your sprue symptom's/conditions improve IF the "artan" drug is causing your symptom's which I find the most helpful thing about the table.  They also note histological feature (degree of villi blunting) to expect on biopsy. They note Losartan can cause "total atrophy of duodenal villi" by their reporting. I also recently had an issue with my potassium levels so I feel sure it is the Losartan. I remember reading a study about how losartan was better at the "chronic cough" I had developed using Lisinopril so I changed to Losartan a few years ago . . . now I find I could of been making my GI symptom's worse. But to answer  your other question since I began taking Folic Acid a few months ago my BP numbers went down to a healthy level of 120/80 or less sometimes . . . but with medicine. I had already been thinking I wanted to try get off the BP medicine (for good) so this is more motivation. C0q10 worked well but it is too expensive for me to take all the time! I called my doctor to have them put me back on Amlodipine/Norvasc and I can't remember why I changed off that medicine to begin with now.  I do remember needing two medicine's back then to control my BP so maybe we stopped the Norvasc instead of the Linsinopril. But now that they have put me back on Norvasc I hope my potassium levels will correct themselves. I just don't feel safe anymore taking Losartan after learning it could be making my GI symptom's worse or causing the to be unreliable. I first thought my touch of D. was from an antibiotic round but when kefir didn't get me back on track I suspected something else when my Vitamin D levels showed up low too again! Thanks everybody for ya'lls great suggestions and good research on my behalf. I also recommend this verywell article if you are still having GI problems and you suspect an "artan" like ARBs BP medicine and looking for a medicine that might have less severe  or more manageable symptom's for your lifestyle because it comprehensively list's the medicine's by drug types. https://www.verywell.com/hypertension-drugs-1745989 no medicine is without a side effect as (I) am learning but I never thought sprue would be one for my BP medicine and why I prefer Vitamins when I can find out which one too take. Now that I have the Norvasc approved as a replacement for the Losartan I might see if my BP goes up again if I stop my medicine all together as I was hoping the Folic Acid might help me with it (without medicine) and it explains why I was low in Folic Acid to begin with again. posterboy,    
  • Upcoming Events