What Do These Results Mean?

[Blueanj]

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.

[Skylark]

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.

[IrishHeart]

I have to ask:

What doctor ordered the test and what were you told?

Who is doing your follow up care?

[beachbirdie]

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!

[Blueanj]

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.

[IrishHeart]

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??

[Blueanj]

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.

[Skylark]

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.

[Blueanj]

Do u recommend seeing a GI instead?

[psawyer]

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.

[IrishHeart]

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.

[Skylark]

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.

[Takala]

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.

[beachbirdie]

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.

[IrishHeart]

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

whaa???

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.

[Blueanj]

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.

[IrishHeart]

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.