"slight Case Of Celiac" Update

[ohsotired]

Ok, so last Friday my GI doc's office calls and says according to my bloodwork results, I "may have a slight case of Celiac Disease" and they recommended that I go on a gluten free diet for a few weeks to see how it goes. I laughed about it when I got off the phone, thinking they were total dimwits. I'd already gone gluten free, but had been pretty lax about it, not really paying attention to things like natural flavorings and modified starches.

So yesterday I get the actual test results in the mail, and now I'm confused, and can see why the doc's office said "may have a slight case"..... They ran a Celiac Disease Comprehensive Panel, a Celiac Disease HLA DQ Assoc., and also Folate, Serum, and Vitamin B12 tests.

Test Results:

Deamidated Gliadin Abs, IgA 1.2 (range 0.0-10.0)

Deamidated Gliadin Abs, IgG 0.7 (range 0.0-10.0)

t-Transglutaminase (tTG) IgA 0 (negative 0-3)

t-Transglutaminase (tTG) IgG 1 (negative 0-5)

Endomysial Antibody IgA Negative

Immunoglobulin A, Qn, Serum 199 (neg 70-400)

Folate (Folic Acid), Serum >24 (ref. int. >5.4)

Vitamin B12 634 (ref. int. 211-911)

Celiac Disease HLA DQ Assoc

DQ2 Negative

DQ8 Positive

So it appears that I only have one of the genes, and nothing abnormal on any of the other tests (except the Folate, which seems high - when previously I thought I was deficient in either that or the B12). (Bear in mind I was still eating gluten at the time of the tests, but probably not as much as I should have been - I tend to steer away from the things that make me feel sick after I eat them.)

Is this enough to say that I do, in fact, have Celiac Disease?

It doesn't matter to me much in regards to the diet (I'll still stick with it), although it certainly would be the kick in the pants I need to be really strict about it. My bigger worry is this: if it is in fact Celiac Disease (as opposed to *just* a gluten intolerance) I should be on the lookout for signs of other autoimmune diseases (already sort of suspect either fibromyalgia or RA due to pain in my joints), right?

What say you, wise ones?

I also wanted to add that by the doctor's notes on the test results, he's suggesting I see a dietitian for celiac disease, but they didn't mention this on the phone to me, nor did they ever refer me to one. So I guess I'm on my own there. I don't know whether to try to keep working with this doc and try to educate him, or to just go find one that knows more about celiac disease and how to work with their patients.

[ShayFL]

Your blood does not suggest Celiac. You can see if you can get a biopsy to see if you have damage. OR you can try the diet to see if you improve.

BUT your high folate can be masking a B12 deficiency. B12 can look "normal" with a HIGH FOLATE when you can be severely deficient and causing neurological damage (to the point it is permanent). Most doctors do not know this......=Google this and print out and take to your doctor ASAP!!

[ohsotired]

Thanks for your reply, ShayFL. I will do some Googling on the high folate and see what I can find.

I also forgot to mention that these tests were all done by LabCorp, in three different cities. I know I've read some things about certain labs being more knowledgeable than others, but didn't know if this would make much of a difference in my case?

[ohsotired]

One more thing I forgot to ask..........I was not taking any supplements of any kind at the time of the blood tests (nor am I now), so what would or could cause my Folates to be so high?

Any thoughts on that?

[Nancym]

Perhaps you eat a diet high in folic acid? I think that's the only way it can go up. I wouldn't worry about it though, it isn't something your body can store and can be toxic.

[ohsotired]

I don't eat a lot of leafy greens, or vegetables in general (I know, I need to fix that)........I have a hard time digesting lots of them.

I do tend to reach for cereal when I eat breakfast, or when I'm too tired to cook, but even that isn't all that often.

So I don't know what else I might be eating that would contribute to that.

[ShayFL]

A LOT of things these days are "fortified" with folic acid. Cereals, breads, sports drinks, nutrition bars, etc.

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[ohsotired]

So I've been thinking about this some more, and I think it may be possible that I wasn't ingesting enough gluten when they did the blood draw for the additional tests. I checked my previous blood results (where they only tested tTG IgA) and the results are not the same.

The first test showed a "1" - still a negative according to the range; the second test it shows "0".

Not consuming enough gluten would account for the change, even though the tests were just a few weeks apart, right?

I guess I don't really care what they call it, I'm staying on the diet.

I just wonder about whether I should be looking into causes for my joint pain and fatigue, or if I should see if those improve with a few more weeks of an even stricter gluten-free diet?

Thoughts?

[Fiddle-Faddle]

The consensus on this board since I joined 2 1/2 years ago has always been that one has to be ingesting the equivalent of 4 slices of bread per day for 3-4 months. Any less, and it's likely that not enough antibodies are produced for a positive test result.

It does seem that many of us with adult-onset celiac had our celiac triggered in part by such large amounts of gluten over a long period of time.

[ravenwoodglass]

I guess I don't really care what they call it, I'm staying on the diet.

I just wonder about whether I should be looking into causes for my joint pain and fatigue, or if I should see if those improve with a few more weeks of an even stricter gluten-free diet?

Thoughts?

I would get strict with the diet, there is a real good chance the joint pain and fatigue will resolve. Do try some sublingual B12 also that should help with the fatigue. When I was first diagnosed one of the biggest surprises was seeing the joint and muscle pain resolve. I never expected that. I was just happy my 24/7 D resolved.

[ShayFL]

Get strict with the diet. And it wouldnt hurt to get a complete Thyroid panel (TSH, Free T4, Free T3 and both antibodies). Make sure they test FREEs.

[Jestgar]

I would get strict with the diet, there is a real good chance the joint pain and fatigue will resolve. Do try some sublingual B12 also that should help with the fatigue. When I was first diagnosed one of the biggest surprises was seeing the joint and muscle pain resolve. I never expected that. I was just happy my 24/7 D resolved.

What she said. Give it six months if you are absolutely sure you've had no cc during that time, and maybe a year if you're only pretty sure. After that you can start checking other foods and additives.

[tom]

The consensus on this board since I joined 2 1/2 years ago has always been that one has to be ingesting the equivalent of 4 slices of bread per day for 3-4 months.

Oy! I've seen so many variations on this SO often, I never thought there was anything near a consensus.

Some docs have claimed a week or 2 (which does seem ridiculous), while some say 4 months or more.

One Dr. I saw, the head of the GI dept. at Stanford, told me a half slice of bread for one month.

Obviously, for many reasons, it's a very difficult thing to quantify.

[Live2BWell]

Oy! I've seen so many variations on this SO often, I never thought there was anything near a consensus.

Some docs have claimed a week or 2 (which does seem ridiculous), while some say 4 months or more.

One Dr. I saw, the head of the GI dept. at Stanford, told me a half slice of bread for one month.

Obviously, for many reasons, it's a very difficult thing to quantify.

You slice of bread comment reminded me of my GI doctor; The day he ordered my celiac pannel I had told him I hadn't eaten gluten in a couple of weeks, I asked him if I'd have to eat gluten before I tested and he said to eat a slice of bread a day over the course of a few days and then get the test done at a lab near me. I was shocked, I wasn't willing to ingest gluten for a few days for the chance it would make my result turn out positive. I took the test right then and there, and didn't bother glutening for a few days (the test still turned out positive, so I can only imagine what it would have been had I not stopped eating gluten!)

[ohsotired]

Thanks for the replies, all. I will definitely ask for the complete Thyroid panel, and bring up the joint pain and fatigue.

How much more effective is a sublingual B12 than a regular capsule? I'm assuming it absorbs into the blood stream much more quickly?

I have a couple other large hurdles to deal with right now, but I'll make separate posts for those.

Thanks again!

[ravenwoodglass]

Thanks for the replies, all. I will definitely ask for the complete Thyroid panel, and bring up the joint pain and fatigue.

How much more effective is a sublingual B12 than a regular capsule? I'm assuming it absorbs into the blood stream much more quickly?

I have a couple other large hurdles to deal with right now, but I'll make separate posts for those.

Thanks again!

Taking a sublingual form of B12 is very important. Your intestines are damaged and can not process it normally right now. The sublingual is absorbed straight into the bloodstream through the mucous membranes in your mouth totally bypassing the gut. That is the method of delivery your body needs right now.

[ohsotired]

ravenwoodglass - I had a *duh* moment when I read what you wrote. Of course taking the capsule form won't do much good. Sheesh. Can someone flip the 'brain fog' switch to OFF please? I hope that gets better quickly too!

Can you recommend a safe brand?

Thanks!

[Live2BWell]

ravenwoodglass - I had a *duh* moment when I read what you wrote. Of course taking the capsule form won't do much good. Sheesh. Can someone flip the 'brain fog' switch to OFF please? I hope that gets better quickly too!

Can you recommend a safe brand?

Thanks!

When they test your thyroid make sure they test your Free T3, Free T4, your Thyroid Antibodies, AND your TSH (many doctors don't test TSH, and assume that if your thyroid tests are ok that your TSH must be okay, which is so not true!); I went to several doctors just having the regular T4 and T3 uptake tests done, and my thyroid levels were mildly off, I was told it was "nothing to be concered about," well fast forward over a year and it turns out the reson why my thyroid levels were only mildly off is because my body hadn't destroyed my thyroid enough to be completely out of whack, and infact I ended up having Hashimotos Disease (autoimmune thyroiditis) - meaning, my thyroid was producing the hormones (hence why my levels weren't too bad) BUT ... my body was also destroying the gland; therefore, being sick all the time.

Good luck and keep us posted

[gfp]

I think you have to make a hard decision:

The first test results you show don't look very "positive" at all but then you were not eating gluten.

Having a single DQ8 just means you are at lower risk of celiac disease however its totally possible (if rare) that you can have neither DQ2 nor DQ8 and still have celiac disease. (Sorry if this is more confusing)

There are other things cause malabsorption and joint pains (lymes springs to mind)... HOWEVER

Remember: 10 years ago celiac disease was thought to be 1:5000 people ... you may have a rarer case but that doesn't rule it out.

If present incidence is thought to be 1:100 and 1:50 celiacs have a 'rare' form this is still the same incidence as we thought celiac disease was 10 yrs ago.

You could try for retesting while eating 'sufficient' gluten.

Your other path is as Jestgar said....

Can you do 100% gluten-free for several months? (No eating out, no processed food) nothing you are not 100% sure of ???

Meanwhile, non of this stops you getting sub-lingual B12 ASAP....

[darlindeb25]

Remember: 10 years ago celiac disease was thought to be 1:5000 people ... you may have a rarer case but that doesn't rule it out.

If present incidence is thought to be 1:100 and 1:50 celiacs have a 'rare' form this is still the same incidence as we thought celiac disease was 10 yrs ago.

You could try for retesting while eating 'sufficient' gluten.

Gfp is so right. What they believed to be true 10 yrs ago, has proven to be wrong, it's just doctors never thought of celiac disease as a problem. 10 yrs later, the numbers have changed significantly, and in less than 5 yrs, in my opinion, the standards will change again. Eventually, I'm sure gluten intolerance will be discribed like pre-type 2 diabetes and diabetes. I think gluten sensitivity/gluten intolerance is still celiac, just the beginning stages. They will be telling us there are gene types more likely to get celiac disease, yet it can happen to anyone.

[gfp]

Gfp is so right. What they believed to be true 10 yrs ago, has proven to be wrong, it's just doctors never thought of celiac disease as a problem. 10 yrs later, the numbers have changed significantly, and in less than 5 yrs, in my opinion, the standards will change again. Eventually, I'm sure gluten intolerance will be discribed like pre-type 2 diabetes and diabetes. I think gluten sensitivity/gluten intolerance is still celiac, just the beginning stages. They will be telling us there are gene types more likely to get celiac disease, yet it can happen to anyone.

Its all rather scary.... and I see it exactly like type 2 diabetes when Dr.s don't even bother trying to treat via strict diet but just go straight for insulin.

There are people like me and you (and this board has a lot of them) who would ALWAYS go for a strict diet over insulin dependence.

Well, I don't have type2 diabetes (and given my diet little would change) but I do have celiac disease.

I DEMAND the right to make my own decisions on if I want a pill or the right to buy gluten-free food. Is that unreasonable?

I happen to have a friend who was clinically obese and developed some complex health problems,

He also smoked 100/d and drank a LOT.

His Dr. gave him a collection of pharmaceuticals, some of which would by themselves reduce his life expectancy.

He asked what would happen if he lost 50% of his weight, stopped smoking exersized daily and drank moderately...

His Dr. told him 'noone does'

Year later he has lost about 30% of his body weight ... stopped smoking completely, drinks moderatly and works out 2 hours EVERY day. He has been taken off the most dangerous drugs and reduced doses of many of the others.... his aim is to be drug free and lean bodymass.

He actually HATES exersize .... his aim is to be able to reduce it to swimming less than 2 miles per day (he finds swimming the least offensive exersize)... he has a metabolism which doesn't help but he's doing it despite being told he wouldn't.

The point is he wasn't given the choice... the MD didn't say you can either .... or .... she just said take the pills. If he hadn't insisted she wouldn't even have said it was an option!

[ravenwoodglass]

ravenwoodglass - I had a *duh* moment when I read what you wrote. Of course taking the capsule form won't do much good. Sheesh. Can someone flip the 'brain fog' switch to OFF please? I hope that gets better quickly too!

Can you recommend a safe brand?

Thanks!

The brand I usually use for vitamins is 'Country Life'. There are other though but do get one that asserts it is gluten, soy and dairy free.

[Fiddle-Faddle]

gfp, you are absolutely right.

My father has one doctor who breaks the mold--he did give my dad a choice, when, at 82, he was diagnosed as diabetic.

My dad lost 25 pounds, exercised every day, and cut out all processed carbs except a slice of whole wheat bread every day. He eats a lot of fresh fruit and vegetables, as well as fish, chicken, and brown rice.

He never needed insulin, and totally stunned his doctor.

On the other hand, his urologist was more typical. Apparently, he diagnosed my dad with prostate cancer over 10 years ago--but never bothered to tell him. He figured it was the "watch and wait" variety, and that there was no use making my dad nervous. After he retired, another urologist took over the practice, and casually mentioned to my dad that his cancer seemed to be growing. It was the first my dad had heard about it.

[ohsotired]

Live2BWell - Thanks for the further clarification on the thyroid tests. When my first round of blood work was done, they did test TSH, but none of the others. I will take your list with me to my next appointment and see if I can get them to do the others with minimal fuss.

gfp - I'm still a little troubled by the lack of anything other than a single gene showing I might have celiac disease, but I have been pretty strict with my diet over the last week and am feeling a lot better as far as the actual gut issues go. I realized today that I haven't had my usual lower intestinal gurgles/gas (what I refer to as the alien in my gut) in almost a week now! So obviously the diet is doing some good.

I cannot say there has been a huge change in BM's though, although I realize that could take a bit more time.

The joint pain I was having seem to have subsided a little bit, though they're not gone. It's just not a constant pain now - it comes and goes.

I'm still really fatigued, and do plan to have the thyroid checked out further, and have already started the sublingual B12. I'm thinking I might still order a test kit from Enterolab, but I do not have any plans to go back on gluten any time soon, even if my GI doc wants to do an endoscopy.

So yes, I will contiue on the diet for a minimum of six months to see how things progress.

ravenwoodglass - 'Country Life' is what I ended up buying, so thank you!