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Endo/biopsy Results Are In

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Well, I finally got my biopsy results today, and they are negative. So, now I need to decide if I believe them!

Here is where I've been...(I am so sorry for the lengthy post, but I just want to make sure I'm including the important points.)

- had an appendicitis scare in late July but appendicitis was eventually ruled out, and i was put on a full liquid diet for 3 weeks; I got terrible guidance, so I was eating anything that I didn't have to chew, including hot oat bran cereal, which made me really bloated; I began keeping a food and lifestyle journal as I resumed my normal diet, and I pinpointed gluten as a possible culprit...by then it was early November.

- gluten light from around the beginning of November until I had my blood test the first week of January, so that was about two months off gluten except for incidental exposure and a few crackers here and there

- blood results were:

tTG Ab, IgA: 4.9

Gliadin Peptide Ab, IgG: 72.5

Gliadin Peptide Ab, IgA: 2.3

Note that they didn't test my total IgA, so I have no idea if I have a deficiency.

- stayed extremely gluten light until about a week before the biopsy.

- the week before the biopsy, reintroduced gluten during a moderate version of the gluten challenge; basically, I ate equivalent of a piece of bread each day, a little more in the days just preceding the biopsy. by the time the biopsy arrived, my stomach was terribly bloated, I was having neurological symptoms and felt depressed and very fatigued.

- biopsy results indicate no parasites, no celiac sprue but DO indicate mild, patchy gastritis...they further tested for atrophy, metaplasia or dysplasia (all negative) and no Helicobacter were identified (which I take to mean I don't have H. Pylori?).

The results also state that they "the classic changes of untreated celiac sprue and the more recently described early or mild changes of untreated celiac sprue are not identified." Before the biopsy, I talked to my doctor about whether the gluten-light diet would undermine the results, but she said the lab could look for early signs of celiac...so I take this last note as a positive sign that they did in fact look for early signs.

Complicating things a bit is the fact that, since the biopsy, I'm unsure of how to interpret my "recovery". Over the course of the last week, I've been feeling very weird neurological symptoms that I have never experienced before. For example, I've had a slightly drunk feeling/feeling of taking OTC cold medicine at times, and also a random weakening of my grip in my left hand. Not at a particular time of day, not during a particular activity, just a sudden weakness accompanied by fatigue. I've also been incredibly anxious. I did experience quite a few mental/neurological symptoms when I previously ate gluten -- anxiety, depressed mood and really bad brain fog -- but I haven't had neurological symptoms that were also so physically manifested before...

I apologize for such an incredibly lengthy post, but does anyone have any general thoughts about the accuracy of my blood and biopsy results? Also, what do you make of my neurological symptoms? Do they seem like a result of my gluten challenge, or does it sound like something else (like carpal tunnel)? I saw my GP about the neuro symptoms last week, and she said I should see a neurologist after I got my results...Of course, my concern is that there is something else undiagnosed, and I know I can't rely solely on neurologists...so I really appreciate any thoughts you may have on my results or these latest symptoms.

Alyssa

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I would personally be very skeptical about the validity of all your test results because you were not eating enough gluten to make them valid. Also, the fact that they did not do the total serum IgA. It is significant the your DGP IgG was significantly higher than your IgGA, but you did not give us the range the labe used in calling that result negative.

You have no doubt read on here that the recommended gluten cosumption is three to four slices of bread daily for an adult for at least 2-3 months sbefore either blood or biopsy testing. Nora takes it even further and mesures out how many grams of gluten you should take for your particular body weight. IMHO, the "challelnge" you did prior to oyour biopsy (for one week!) did not accomplish much, if anything. Instead of being gluten 'heavy' before testing for two months, you were gluten "light'.

I think you should just give the diet a strict trial for three months and see how you go.

As for the neurological symptoms, yes, I would think they would be definitely related to the little bit of gluten you were consuming for a week. The feeling drunk sensation may well be gluten ataxia, and the weakness, fatigue , anxiety, depression and brain fog are all classic neurological symptoms of gluten sensitivity. If you are not celiac (and that has not been ruled out) you are at the very least gluten sensitive. .

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I would personally be very skeptical about the validity of all your test results because you were not eating enough gluten to make them valid. Also, the fact that they did not do the total serum IgA. It is significant the your DGP IgG was significantly higher than your IgGA, but you did not give us the range the labe used in calling that result negative.

You have no doubt read on here that the recommended gluten cosumption is three to four slices of bread daily for an adult for at least 2-3 months sbefore either blood or biopsy testing. Nora takes it even further and mesures out how many grams of gluten you should take for your particular body weight. IMHO, the "challelnge" you did prior to oyour biopsy (for one week!) did not accomplish much, if anything. Instead of being gluten 'heavy' before testing for two months, you were gluten "light'.

I think you should just give the diet a strict trial for three months and see how you go.

As for the neurological symptoms, yes, I would think they would be definitely related to the little bit of gluten you were consuming for a week. The feeling drunk sensation may well be gluten ataxia, and the weakness, fatigue , anxiety, depression and brain fog are all classic neurological symptoms of gluten sensitivity. If you are not celiac (and that has not been ruled out) you are at the very least gluten sensitive. .

Thanks very much, Mushroom. I hadn't read the 3-4 slices of bread on here, but then again, I was a little surprised when my doctor said that I could eat just a slice of bread a day...I am pretty small, so I didn't know what would be appropriate. Of course, at the time, a slice of bread felt like an enormous quantity, so I was extremely conflicted about things, especially since some folks have talked about permanent damage from the challenge itself.

In addition to going to the neurologist and sticking with a strictly gluten-free diet, I have been contemplating the following action plan:

- getting total IgA tested, which should not ever change, right?

- try to have zonulin levels checked (but is this commercially available? i am near dr. fasano's celiac clinic, so perhaps they could test it??)

- doing the genetic test

- testing the igG and igE of other foods, (and igE for gluten)

- doing enterolab stool test

- getting screened for SIBO since it seems like an easy test

Alternatively, I've also wondered if this could be non-celiac intestinal permeability, because this was all preceded by two years of full-time grad school and full-time work...I've wondered about the effect of all that stress on the general health of my digestive system. I was thinking about going strictly gluten-free for about six months, focusing on healing my gut, and then trying to reintroduce gluten to see what happens.

What do you think?

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I think a consult with Dr. Fasano would be very useful, particularly now that he has loosened up a little on diagnosis, and has come to recognize non-celiac gluten sensitivity. I do not believe that he currently has a tst for zonulin, though. I also don't believe that intetinal permeability can be caused by stress in and off itself; I am no expert on zonulin but I believe it is in response to gluten, not stress, that zonulin occurs.

Genetic testing is interesting in showing predisiposition, but not definitive. Dr. Fasano includes it as one of the four out of five tests that must be positive for a celiac diagnosis.

SIBO is always a distinct possiibility with celiac.

Many people use Enterolab testing. MD's generally do not regard the stool test as diagnostic for celiac, although it is useful in measuring fat absorption and sensitivities to corn, casein and soy.

Some people swear by food allergy testing; others, including me, do not find it particularly useful. It can show you sensitivite to many foods which you actually do tolerate and does not test for many of those that you do not.

Whether or not you do any of those is entirely up to you. As I stated previously, if you do not go to see Dr. Fasano, I think I would just try the diet (including removing lactose) and see how it works for you. It is possible you will have to eliminate other things along the way, but if you keep a food and symptom journal you should be able to pinpoint what you need to remove. I would also recommend the use of a good quality probiotic to help heal your leaky gut which you probably have.

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