So Maybe I Am Gi Or Celiac? Maybe I'm Not....

[maybe-maybenot]

Greetings,

For the past few years I feel like I'm getting more and more tired. Other symptoms include frequent heartburn, headaches, inability to focus (brain fog?), frequent colds, flus, almost always stuffed up to the extent that i didn't realize i had stopped breathing from my nose completely etc. I've tried a few things to fix this, work out (made me more tired), sleep study (nothing real found not, not even sleep apnea, was given a CPAP machine anyway and it didn't really fix anything), sleep more, sleep less, diet (i've put on considerable weight as well), etc.

I also have issues with digestion, and I saw an internist (?) and after a biopsy was diagnosed with eosinophilic esophagitis. After the diagnosis of EE, I went on an elimination diet for 2 months (Was meant to go 6 but went on vacation and stopped), of dairy and wheat products. As a person who doesn't like meat (not morally opposed just never liked it) that elimination diet pretty much took out most of my food options . Anyway I never gave it that much thought because even though when food got stuck in my esophogus, it was quite uncomfortable, it happened infrequently enough that it didn't seem like worth given up dairy and wheat. However, as my symptoms worsen, I've been a lot more focused on trying to figuring out what the cause could be.

I recently had a blood test, and was found to have insufficient levels of B12, and Vitamin D (even though I Take B75 Complex and Multivitamins), and my ALT score indicated that there might be a problem with liver function. I requested a second blood test after that for gluten intolerance, but surprisingly that needs 5 weeks to come back? So now I'm pondering whether or not I should eliminate gluten now anyway, knowing that even if the blood test came back with any indication of intolerance to gluten, I will probably need to get a probe done. I feel completely exhausted now, and I just want to know what is wrong. My biggest issue is brain fog, and with my line of work, the inability to concentrate is really hard to deal with. Anyway I'm not sure why I wrote all this out, I guess looking for feedback? Thanks anyway for reading this...

[Madagascar]

i don't have a clear-cut answer for you, but have 2 thoughts. one is that the blood tests often are not accurate. the truely gold standard test is if you go completely gluten-free for a minimum of 6 weeks and then your symptoms clear up.

however, if you are going to get tested, you should do the blood test and wait for results (which should take less than a week) before you go gluten-free.

my daughter had the blood test done last january and it came back negative. this november she went completely gluten-free and within 4 days we could tell that was the source of her problems. so . . .

gluten intolerance/celiac disease is tied to over 300 other diseases. some have very strong ties and some are more indirect. if i were you and feeling miserable, i'd give it a serious 6 week effort and skip the testing. just my 2 cents worth.

[maybe-maybenot]

Had crepes last night and just woke up 10 minutes ago with the worst heartburn ever, felt like i wanted to puke but instead kept bringing up large amounts of saliva that I kept spitting out. Anyone ever experience that or know what that is?

[mushroom]

It's called pre-puke, or trying not to puke. I sometimes get like that if my body is rejecting all the supplements I just took and I am trying to keep them down Once, I did not succeed

[Cara in Boston]

Did you feel better when you were gluten free for two months?

[maybe-maybenot]

I don't remember for sure, I remember losing weight which was good But I remember mostly grumbling about all the things I couldn't eat anymore . I'm going to go gluten free in 2 days for another few months to test. The problem is if I'm to have a biopsy it will be in at least 1.5-2 months minimum so I don't want to skew the results of that by going gluten free now. How quickly will the small intestines recover?

[ynot]

Hi maybe_maybenot,

It is hard to say if you have a gluten problem, but you already know you have a B12 ( and D ) problem. A B12 deficiency can cause all the symptoms you've listed. Standard B-complex and multivitamins will not do much to fix the situation. I use Enzymatic Therapy B12 Infusion, which is a sublingual methycobalamin lozenge. Used properly this will get a good amount b12 into your system. I would suggest you visit the Phoenix Rising Forums and look at the "Active b12 Protocol" thread. There is ton of information there and I think you will find many posters with with similar symptoms. Good luck.

[nvsmom]

Sorry you are not feeling well, it can really wear you down.

Ynot is right in suggesting the sublingual B12 tablet. B12 is best absorbed in the mouth; that goes for D3 vitamins too. I take 1000-4000UI of sublingual D3 throughout the day. It's a good idea to take calcium a few times a day along with the D3 because a body can only absorb a certain amount of calcium (I think it's around 700mg) at a time, and celiacs are often low in calcium (and ferritin and potassium) too.

Make sure the doctor ordered the right tests for celiac too. Since you have to wait so long for results, it would be a shame if you found out the wrong tests were ordered. I believe the most common tests for celiac are:

TTG IgA and IgG

total serum IgA

EMA IgA

DGP IgA and IgG

From what I understand on biopsies (I never had one), the healing starts when you stop making the auto-antibodies (in the above lab test) but that isn't always as soon as one stops eating gluten. Some show no intestinal healing until a few years have gone by, others start healing within weeks. To be conservative, I would try to continue eating gluten until mid-February so you'll only have been gluten-free for a few weeks to a month before your endoscopy.

Best of luck to you in what ever you decide.

[maybe-maybenot]

Thank you. I received the results of the test that was ordered, and the one score that stood out was an elevated IgA score (45 when the expected score was less than 20). Alone it's not indicative of much as a few things can cause that apparently, but gluten sensitivity is one of them.

  On 1/20/2013 at 5:07 PM, nvsmom said:

Sorry you are not feeling well, it can really wear you down.

Ynot is right in suggesting the sublingual B12 tablet. B12 is best absorbed in the mouth; that goes for D3 vitamins too. I take 1000-4000UI of sublingual D3 throughout the day. It's a good idea to take calcium a few times a day along with the D3 because a body can only absorb a certain amount of calcium (I think it's around 700mg) at a time, and celiacs are often low in calcium (and ferritin and potassium) too.

Make sure the doctor ordered the right tests for celiac too. Since you have to wait so long for results, it would be a shame if you found out the wrong tests were ordered. I believe the most common tests for celiac are:

TTG IgA and IgG

total serum IgA

EMA IgA

DGP IgA and IgG

From what I understand on biopsies (I never had one), the healing starts when you stop making the auto-antibodies (in the above lab test) but that isn't always as soon as one stops eating gluten. Some show no intestinal healing until a few years have gone by, others start healing within weeks. To be conservative, I would try to continue eating gluten until mid-February so you'll only have been gluten-free for a few weeks to a month before your endoscopy.

Best of luck to you in what ever you decide.

[mushroom]

  On 2/5/2013 at 3:37 AM, maybe_maybenot said:

Thank you. I received the results of the test that was ordered, and the one score that stood out was an elevated IgA score (45 when the expected score was less than 20). Alone it's not indicative of much as a few things can cause that apparently, but gluten sensitivity is one of them.

On which IgA test did you receive that score, and what were the ranges the lab used? Was it the tTG test? If so did they also do the quantum serum IgA test? If it were the tTG test that was positive, they will need to do some other testing, because that one is not specific for celiac disease.

[shadowicewolf]

  On 2/5/2013 at 4:17 AM, mushroom said:

On which IgA test did you receive that score, and what were the ranges the lab used? Was it the tTG test? If so did they also do the quantum serum IgA test? If it were the tTG test that was positive, they will need to do some other testing, because that one is not specific for celiac disease.

The uni of Chicago argues with that. They say its one of the best ways to test for it.

"For most people, the serum anti-tissue transglutaminase (tTG-IgA) is the best antibody blood test for screening for celiac disease; however, it is important to also get a total serum IgA. Having this total serum test will help bolster the reliability of the tTG test. The reason for this is that while the tTG test is very reliable, its reliability is dependent on the premise that the person being tested adequately produces IgA. If the individual does not produce sufficient amounts of IgA and is instead IgA deficient, then tTG-IgG should be tested instead."

Found here Open Original Shared Link

Though they also say that a biopsy is still required was that what you meant?

[mushroom]

A new generation of tests that use deaminated gliadin peptides (DGP) have sensitivity and specificity that are substantially better than the older gliadin tests.4 DGP tests are more accurate than tTG and AGA and may be the most reliable tests to detect celiac disease in people with IgA deficiency.

Open Original Shared Link

DGP (Deamidated Gliadin Peptide)

This is a newer type of gliadin test, initially developed and manufactured by Inova Diagnostics. It was developed to more accurately identify people with celiac disease. Eventually, it might overtake the tTG test because it is excellent at finding those people who have gluten gut damage. This test detects an immune response to a very specific fragment of the gluten molecule (this fragment is a short peptide of gliadin – a gliadin peptide). Although this test is excellent for detecting celiac disease (in our Clinic I have found it to be more reliable that the tTG test), it does not detect gluten sensitivity.

It will not pick up the people who have the other symptoms of The Gluten Syndrome. It does not replace the IgG-gliadin test.

Because of its name, it is now frequently confused with the old IgG-gliadin test.

Value of DGP: If both high, then celiac disease is almost certain. Perhaps more reliable than tTG for young children.

Open Original Shared Link

The DGP is very specific to celiac disease. The tTG can be elevated for other reasons. That is what I meant. And without knowing the quantum serum IgA there is no way of knowing if the tTG is a valid score.

[nvsmom]

  On 2/5/2013 at 3:37 AM, maybe_maybenot said:

Thank you. I received the results of the test that was ordered, and the one score that stood out was an elevated IgA score (45 when the expected score was less than 20). Alone it's not indicative of much as a few things can cause that apparently, but gluten sensitivity is one of them.

Was it just IgA or one of the celiac tests: ttg IgA or EMA IgA or DGP IgA? ... The doctors made this so confusing.... LOL

I believe elevated ttg IgA levels can be caused by things like e.coli, Hashimoto's, and a few others but it usually points to celiac. I thought it had a specificity of about 80% but I just found an Open Original Shared Link. That means that 95% of the people with a positive test are celiacs.

IgA is often lower in celiacs than in the rest of the population; I've read that in a few places as well as Open Original Shared Link. That's why total serum IgA needs to be tested for the ttg IgA and EMA IgA tests; if IgA levels are too low, those tests will have false negatives.

DGP tests are new and very specific to celiac. Their newness is the problem though since many doctors just don't keep themselves current.

[shadowicewolf]

  On 2/5/2013 at 5:17 PM, nvsmom said:

Was it just IgA or one of the celiac tests: ttg IgA or EMA IgA or DGP IgA? ... The doctors made this so confusing.... LOL

I believe elevated ttg IgA levels can be caused by things like e.coli, Hashimoto's, and a few others but it usually points to celiac. I thought it had a specificity of about 80% but I just found an Open Original Shared Link. That means that 95% of the people with a positive test are celiacs.

IgA is often lower in celiacs than in the rest of the population; I've read that in a few places as well as Open Original Shared Link. That's why total serum IgA needs to be tested for the ttg IgA and EMA IgA tests; if IgA levels are too low, those tests will have false negatives.

DGP tests are new and very specific to celiac. Their newness is the problem though since many doctors just don't keep themselves current.

I've also read that, because of that, they aren't exactly sure if its more spacific than the IGA TTG tests. It could be because of the newness as well.

From the chicago site:

"There is also a newer version of the old screening test that checked the levels of anti-gliadin antibodies, called DPG (for deamidated gliadin peptides). While evidence shows these tests to be as reliable as the tTG, they are not necessarily better than the tTG."

Open Original Shared Link

[Smylinacha]

I have been gluten free for a few weeks and feel 95% better:) I might have a problem with dairy when I eat too much of that (gas) but there was only 1 day I felt sick and I think I accidentally glutened myself but other than that....no gluten = almost back to normal for me.

[maybe-maybenot]

I saw a Gastroenterologist today and he saw my blood results (it was IGg that was elevated not IGa, sorry). Anyway he said the test that was ordered by my physician was out of date and made me take a different one (ttg). He will be doing an esophegeal and small intestine scope and biopsy (March 5 or sooner).

I'm also seeing an allergist next week, that should be interesting. As a side note, 3 years ago I did an environmental allergy test and reacted to every allergen, in fact the doctor didn't believe it and retested me on another arm and again reacted to everything.

[maybe-maybenot]

I saw an allergist and he did a skin prick test, and I came back negative for all foods, including gluten and dairy.

[gatita]

That's good you're getting the right blood tests and the scope. And of course, the diet itself can be the real test for those of us with GI symptoms.

Did your previous allergy test 3 years ago include foods, too?

[frieze]

  On 2/13/2013 at 7:36 PM, maybe_maybenot said:

I saw an allergist and he did a skin prick test, and I came back negative for all foods, including gluten and dairy.

do remember that celiac is NOT an allergy!

[maybe-maybenot]

Yes my previous allergy test actually did have food allergens, and according to that test I was allergic to everything.

[maybe-maybenot]

  On 2/15/2013 at 3:59 AM, maybe_maybenot said:

Yes my previous allergy test actually did have food allergens, and according to that test I was allergic to everything.

I'm going in for my intestinal biopsy (as well as esophagus) on tuesday.  Personally, I'm just really exhausted... hoping to find whatever is causing all of this.

[scenicgurl]

  On 1/17/2013 at 3:25 PM, Cara in Boston said:

Did you feel better when you were gluten free for two months?

I felt so much better. I guess for me the biggest improvement was my lack of migraines. Before cuting out gluten, I used to get 2-3 a week and that had been the case for 12 years. Sometimes they'd span several days. Now I only get 2-3 a month. HUGE change for me. Plus I don't have constant stomach cramps and pains anymore. I won't lie though after 2 months I was still strugging with what I could actually eat so my meals were kind of the same thing over and over.

[maybe-maybenot]

Had my biopsy today.  The dr. said there wasn't much in the way of physical evidence to indicate an issue, although he said there was a fair bit of damage at the bottom of my esophogus from acid.  They did a biopsy and the results of those should be available in 2-3 weeks.