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

  • 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

What Do These Results Mean?
0

17 posts in this topic

Hi,

I had a Celiac Disease Panel done over a month ago.

Here's what it said. I am not sure how to interpret it:

Celiac Disease Panel

Endomysial Antibody IgA Negative

t-Transglutaminase (tTG) IgA 4 Flag High

Negative 0-3

Weak Positive 4-10

Positive >10

It says endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy.

So, since then I have done my best with what I am learning to take all sources of gluten out of my diet. Before this, I had bloating and distention daily, loads and hours of gas, a heating sensation in my stomach/intestines, anxiety, fluid retention, lactose intolerance, and I have Hashimoto's thyroid, too.

Since removing it, I have noticed a big reduction in gas, bloating and distention and have begun to lose weight and have lost my voracious appetite from before. I don't have many food cravings either. I am also free of all milk derivatives.

Occasionally, I have gas, but it may be related to lack of water or pms. I even bought a new coffee machine whose company says all their products are gluten/gluten by product free.

Last Saturday, I ate corn chips at Rubios. They did not have gluten, but I later learned that they are made in shared friers with beer battered fish, etc. Monday morning, I had a burning sensation on the back of my legs, behind my knees and noticed a nasty, burning red rash. I have had dermatitis before, and noticed dermatitis spots on my legs and stomach. After a week, it all began to go away and now itches a little as it heals. I rarely have had a rash like this, and assumed it was a heat rash. If I had celiac all along, why did the rash only appear now, when I'm gluten-free?

My question is - what is the likelihood I have celiac vs. gluten sensitivity? I've had endoscopies/colonoscopies over the years, and celiac has never been discussed. I was told to stop dairy and gum, but that never helped the gas. Gluten removal has stopped the bloating mostly.

I don't want to eat wheat again b/c I hate how I feel on it. But I've heard that if you don't have celiac and you remove gluten, it's bad for you. Any ideas of what I should do? Before the bloodwork, I had removed some gluten but still binged on half a bag of pita chips daily, as I craved them. My waffles, yogurt and most other things were gluten free, as I had begun to suspect gluten.

0

Share this post


Link to post
Share on other sites


Chances are it's celiac rather than gluten intolerance becasue you have a positive celiac blood test. Didn't your doctor order follow-up testing? You should have had at least DGP-IgG and IgA to confirm the positive TTG blood test and the usual standard of care is a biopsy. Now that you're off gluten these things can't be done.

It's NOT bad for you to remove gluten if it makes you feel ill. That's ridiculous. Whoever told you it's good to eat something that makes you sick doesn't have a lick of common sense.

0

Share this post


Link to post
Share on other sites

I have to ask:

What doctor ordered the test and what were you told?

Who is doing your follow up care?

0

Share this post


Link to post
Share on other sites

I don't know where you might have heard it is bad to avoid gluten if non-celiac! In reality, grains are a relatively recent addition (well, relatively recent compared to the timeline of history!) to the human diet. There is no harm in avoiding it, we do not have a nutritional "need" for it.

Have you been given any referrals for follow-up? You have a positive celiac test on one that is pretty specific. They should do a couple more.

If you don't need a diagnosis, and the diet makes you feel well, and you think you can stick to it and not cheat (yes, even a little infrequent "cheat" is damaging to a person with celiac) then you don't need for a doctor to tell you to start. You can do it on your own for free.

There is lots of support and information available here when you need it!

0

Share this post


Link to post
Share on other sites

Did I test positive even though it sad negative and weak positive? That part was confusing to me. It was an endocrinologist who tested me b/c I saw her for hashimoto's. I asked for the screen b/c I know that celiac, lactose intolerance and thyroid stuff is common together and I was so miserable. I'm still having some symptoms, but maybe it takes awhile to resolve? She is ordering a followup blood test after three months of me being gluten free. She is also checking my b12 and vitamin k and d.

0

Share this post


Link to post
Share on other sites

But I've heard that if you don't have celiac and you remove gluten, it's bad for you.

That's Baloney!

Who told you this giant lie?? :)

0

Share this post


Link to post
Share on other sites

A friend whose son was diagnosed and then undiagnosed w celiac. Doesn't make sense but she keeps telling me to find out if I really have a gluten issue or if its something else. I don't want to eat gluten to find out. I have a healthy respect for what happens when I eat it. My nutritionist also said bc the test was a weak positive it could have been a one time allergic reaction. I'm just confused and want to know.

0

Share this post


Link to post
Share on other sites

Did I test positive even though it sad negative and weak positive? That part was confusing to me. It was an endocrinologist who tested me b/c I saw her for hashimoto's. I asked for the screen b/c I know that celiac, lactose intolerance and thyroid stuff is common together and I was so miserable. I'm still having some symptoms, but maybe it takes awhile to resolve? She is ordering a followup blood test after three months of me being gluten free. She is also checking my b12 and vitamin k and d.

Your endocrinologist really screwed up. She should have told you to keep eating gluten and referred you to a GI. It's reasonably common to only be positive on one celiac test and still have celiac disease. The blood tests aren't very good so even one weak positive is cause for concern. Rarely Hashimoto's can cause TTG-IgA but it's usually caused by celiac disease. Now it's too late unless you're willing to go back on gluten for a couple months to get the rest of the testing you need.

Yes, celiac takes a longer time to resolve than gluten intolerance.

1

Share this post


Link to post
Share on other sites

That's Baloney!

Who told you this giant lie?? :)

There is nothing unhealthy or harmful about not eating gluten, or any other grain for that matter. The nutrients in grain are available from many other sources.

0

Share this post


Link to post
Share on other sites

There is nothing unhealthy or harmful about not eating gluten, or any other grain for that matter. The nutrients in grain are available from many other sources.

My childhood friend, diagnosed with MS for 25 years, has kept her MS at bay, even running the Boston Marathon years ago by taking gluten (and in fact, all grains) out of her diet.

She is healthier and more energetic than most people I know. :)

She is an inspiration.

0

Share this post


Link to post
Share on other sites

Do u recommend seeing a GI instead?

Depends on whether you want to pursue a celiac diagnosis, or if you're comfortable just eating a celiac-safe diet for the rest of your life. If you want to pursue diagnosis you need a GI. It's your choice, really - gluten makes me so sick I opted for the lifelong diet rather than challenge for more testing. Problem is with the positive TTG you can't safely assume you're not celiac.

0

Share this post


Link to post
Share on other sites

If you have another outbreak of "Mystery Rash," which has a good likelihood of being DH, you can have the skin right next to the outbreak blisters biopsied. A positive biopsy from that is considered a celiac diagnosis if the doctor isn't an idiot.

2

Share this post


Link to post
Share on other sites

A friend whose son was diagnosed and then undiagnosed w celiac. Doesn't make sense but she keeps telling me to find out if I really have a gluten issue or if its something else. I don't want to eat gluten to find out. I have a healthy respect for what happens when I eat it. My nutritionist also said bc the test was a weak positive it could have been a one time allergic reaction. I'm just confused and want to know.

Sorry to say this, but your endocrinologist and your nutritionist are equally dumb.

A weak positive celiac test does not indicate allergy. An allergy is mediated by a different set of immune globulins, IgE.

Basically, with this disease and many others, doctors don't know what to do with it in the early stages, before the catastrophic damage has occurred. Your weak positive could be at the lower end (and I'm just speculating) just because you have NOT yet sustained the heavy-duty damage. I'm not a medical professional, just sharing from the collective wealth I've been given by many who are wiser than I. Far better to take care of it early rather than after your body has been wracked by the nutritional deficiencies and pain that come later.

I wish someone had told me 12 years ago that Hashimoto's and celiac were related. I might have been able to salvage some of my natural thyroid function. I'd gladly have given up my pizza, pasta, and sourdough in order to save my thyroid.

1

Share this post


Link to post
Share on other sites

My nutritionist also said bc the test was a weak positive it could have been a one time allergic reaction.

whaa??? :blink:

Your nutrionist does not know what she is talking about, hon.

Sorry.

I am sorry your endocrinologist didn't just make the call from these results, if having a solid DX will make you feel more at ease. And I do understand the confusion and frustration you are feeling, believe me!

Read the responses these people with real experiences and wisdom have written and make your own decision.

But from all you are telling us, I think you already know what you need to do.

If someone feels "bad" on gluten, they have some type of gluten sensitivity/intolerance. It is not an "allergic" response.

The question is "How bad do you want to pursue a set-in-stone DX?", because you are going to have to chow down on some serious gluteny foods to do the testing they require for those two words to appear on your medical records.

Unless of course, the Endo is willing to say it IS celiac disease. Why not just ASK!?

The treatment is still going to be the same: a STRICT gluten-free diet.

0

Share this post


Link to post
Share on other sites

I'm also becoming suspicious of corn. Does anyone know of an excellent food allergy specialist in Phoenix?

If you have another outbreak of "Mystery Rash," which has a good likelihood of being DH, you can have the skin right next to the outbreak blisters biopsied. A positive biopsy from that is considered a celiac diagnosis if the doctor isn't an idiot.

Do I see a dermatologist for the rash to be biopsied?

I'm thinking of removing corn too. Terrible pain today after eating corn.

0

Share this post


Link to post
Share on other sites

Allergies do not give you stomach pain. They cause histamine responses.

You may wish to read about the differences between allergies and intolerances and CELIAC . Contrary to what people say, Celiac is not a "gluten allergy".

I am not sure what you think you will gain from allergy testing.

Corn is difficult for many people to digest, especially in a gut that is ravaged by celiac.

I always had stomach and abdominal pain after eating corn (my favorite veg) and now, I do NOT! :)

Take out any foods that give you grief. Let your gut heal and try the food again in a few weeks.

It takes time to recover from the damage done in 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
      102,672
    • Total Posts
      914,363
  • Topics

  • Posts

    • artificial sweeteners?
      Some artificial sweeteners give me a stomach ache/bloating.  some do not.   Its pretty immediate.  I have never heard of a food intolerance that manifests like the flu or a virus.  Maybe your bars were bad/food poisoning?
    • Gluten free diet, positive celiac screen...what should I eat now?
      I think it might be worthwhile to call the GI's office and talk about their plan now.  Find out if they can setup the endoscopy now, rather than wait until your appointment.  Tell them what your positive result was, or make sure they have a copy of the test done and the result.  If they want another celiac antibody test panel, you might be able to get that done ahead of time.
    • Pins And Needles
      Just came back to update! There was a cancellation at the neuro so I got in this past Tuesday. Physical exam normal and he didn't suspect a neuro disease. Plan was to run some bloods & then MRI if nothing & then EMG if nothing in the first two. He said he sees autoimmune folks every now & again and sometimes they get to the end of the testing & nothing is found. Told him it wouldn't be the worst thing. So bloods for vitamin deficiencies, MS and Lupus were run. I also went to family dr and adrenal testing was going to start. Got bloods back yesterday and it was NOTHING I expected. All was normal but the B6. I am toxic! Look up those symptoms & I'm the poster child! It started 10 days into gluten-free diet. Just not sure why. Stopped my multi vitamin & feel the twitches are way less in the past 24+ hours. I just knew this was something I added or took away. B6 is water soluble so I should flush it but I'm not. Why? That's the next round. Thanks Cristiana and everyone else for your replies and eyes to read my freak out a few weeks ago. 
    • artificial sweeteners?
      A few weeks ago I ate a quest bar and ended up feeling a bit sick for the rest of the day, and that night I started feeling nauseous and had the chills, shortness of breath, and ended up staying up all night because I just didn't feel well. I thought maybe it was too much fiber or protein, I definitely don't get enough of either (working on it) so I thought perhaps going from barely any to quite a bit could be it. Then I scrapped that idea, thought it was corn. I've heard that corn can cause symptoms similar to gluten.. but I eat other things with corn in them on a regular basis, so nope. Finally, I thought maybe it could be artificial sweeteners. I'm not a big fan and generally try to avoid them so I haven't had them in a while. Well, yesterday I had another quest bar left so I opened it and took the smallest bite in the world.. I mean it was practically a crumb. I also happened to eat a piece of sugar free gum so it could have been either one. But shortly after I started to feel kind of 'off', which turned into the same overall bad feeling that I had last time and I didn't sleep until 7am because of it. The reaction wasn't as bad as last time, but it definitely wasn't pleasant. But whether it was the gum or the bar it seems hard to believe that such a small amount would make me feel that sick.. Though if I had that much gluten I would be dead to the world for days, so maybe not THAT unlikely. However, I then noticed that the antacid that I sometimes take if I get glutened or something has sorbitol in it and I've never felt sick from that. So does it just happen that sorbitol doesn't make me sick but other sweeteners do? Also, I've never liked drinking diet soda because for as long as I can remember it has made my stomach upset. Not like this, but just that 'off' feeling for a couple hours after drinking it. Does anyone else get sick from artificial sweeteners? I'm hoping this is it, otherwise I'm kind of at a loss. I can't think of anything else in those bars that would make me sick and it doesn't seem like a coincidence that I got sick both times I tried eating them. I know it wasn't gluten either because I ate pretty plain things both days, nothing out of the ordinary that would do that. Plus the reaction is different. It's similar to gluten but not the same, with gluten it's (at first) just my stomach and with this like I said it's just a general sick feeling. What do you think? 
    • Mcdonald's French Fries
      Great discussion! These are my take-aways in researching this site and several others (not just for McD's but other items like beer & wine for a friend who crafts his own, but I am very sensitive +other digestive issues) 1. Cross contamination is always a possibility so be aware, be prepared & be safe. 2. Gov't regs regarding gluten-free claims are not great. Plus they deal in Parts Per Million (ppm) so as long as it is below the threshold, it can claim gluten-free. Your allergy & my sensitivity will be triggered at different levels, so we may react to to something that is less than 0.001ppm & is labeled as gluten-free. 3. Some cooking/processing procedures can destroy the offending allergen  (this case, gluten). I got this from 2 sources. One when I was trying to learn about gluten-free alcohol products. The other from a friend whose daughter is severely allergic to peanuts, coconut & a few other items. She spoke to the Allergist about a food item her daughter was exposed to but did not react as expected (thankfully!). After looking into it, the doctor explained that even though the allergen is listed, it may not have been the part of the food that she is allergic to (I know I am explaining this poorly, sorry) &/or the processing of the ingredient can alter it on a molecular level so as to not cause a reaction. Apparently the opposite is true: processing changes can cause us to react to things we otherwise wouldn't. 4. I don't find McD's to be greasy (you should see how I cook!). But it is so full of chemicals it's no wonder humans don't process it well. 5. COOK :-D   Certainly, I am not an expert & I know I probably didn't interpret everything correctly. So, if you have more info to help correct my "take-aways", it would be welcomed. Thank you!
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

    There are no registered users currently online

  • Member Statistics

    • Total Members
      59,699
    • Most Online
      1,763

    Newest Member
    cookbookaddict1
    Joined