Doc Appt. Yesterday, Met My New Gastroenterologist

[julirama723]

Well, I finally had my doctor's appt. yesterday with an actual gastroenterologist, not one of these local hacks I've been to...

He agreed that my serological results could be a false negative because 1) they did not test Total IgA and 2) because I was basically eating gluten-lite prior to testing. He did NOT rule out celiac disease at all, and said he would order a FULL panel as well as an endoscopy if I so desired.

We talked about other problems and discussed sleep apnea, depression, thyroid. He was VERY concerned that no doctors had seemed concerned with my thyroid (considering my history of Graves Disease) and ordered a thyroid panel. I was really frightened by his shock at how red my cheeks were (they've been red forever, doesn't matter what I do, people will ask me if I have rosacea!) and combined with my absolutely FROZEN hands (as well as depression, fatigue), he had me tested for lupus.

He also referred me to an allergist/immunologist to be tested for food intolerances vs. food allergies, and ordered tests for thyroid, CBC, hormones, iron, lupus, etc.

We talked about gluten-free diet. He said "you and I both know regardless of whether it's gluten-intolerance or celiac, the only treatment is going gluten-free." He then said, if I wanted a definite answer either way I would have to do a gluten challenge. I knew this coming in. I did NOT expect him to be so concerned about thyroid problems or lupus.

So I've decided to do the gluten challenge if not to diagnose celiac, at least to pinpoint my problem and come up with a solution.

I'm keeping a food diary, listing food, ingredients, symptoms, when they occur, and duration. Is there anything else I need to keep track of?

What is really interesting (and scary) is that I have NOT had any of my "typical" pre-gluten-free symptoms (constipation, bloating, gas) but have had nausea, mild cramps, and for lack of a better description "neurological" symptoms almost immediately. Today I had a "thyroid" episode that lasted for 45 minutes (wierd out-of-body/dreamlike episode that used to happen when I had Graves Disease, I have not had this in 10 years) and it really scared me. Is it typical for symptoms to change like this?

[ShayFL]

You are far braver than I am. I hope you can hang in there for the tests.

[julirama723]

I hope so too, ShayFL.

I know I had said previously that I wouldn't go back to a gluten-filled diet just for some test, but finding out that it could possibly be something else really threw me for a loop. When I went in for that first blood test, I didn't even know what to ask for specifically, or what to expect. I went gluten-free before I knew my results and wasn't eating enough gluten to begin with (for anything to show up) so I feel like in a way, that was a mistake. Now I feel like this is another chance to get a better picture of what's going on.

This could be a really bad decision, I know that. My doctor did not pressure me. My fiance did not pressure me. He said he would neither encourage nor discourage me (to do the challenge or to stay gluten-free), he just said to think long and hard about the possible effects of such a choice, and do I want to take that chance? I just feel like I have a chance to put this matter to rest, "Am I, aren't I?" and to find out if something else is wrong, or if maybe a combination of things are going on...

Going back to my original question:

Does anyone know if it's "typical" for symptoms to change?

[lizard00]

Does anyone know if it's "typical" for symptoms to change?

My symptoms have most definitely changed. When I get a trace of gluten, it feels like my whole small intestine is on fire. That wasn't a normal reaction for me before gluten free.

[nora-n]

With me, the neurological symcame back after six weeks. Biopsy was done after five weeks, way too soon......by the way, the neuros stuff is caused by ttg-6 antibodies, for which they do not test. Often patients with neuro problems have at least one copy of DQ1 (which is DQ5 or 6 or 1) and they do not develop so distinct signs of celiac visible in biopsies.....my blood test for ttg2 was negative, but not 0. (done prior to gluten challenge. They did not do more blood tests after gluten challenge)

[julirama723]

(I also posted this in a separate topic called "Low Serum IgA.")

I got a call from the doc's office today, and spoke with his nurse. My test results are back, and everything was "normal" (hormones, thyroid, nutrients, no lupus) except serum IgA, which was low. I know that low IgA can mean the possibility of celiac, since other tests in the celiac panel are meaningless if serum IgA is low. Low IgA also means I'm at risk for GI problems, autoimmune diseases, and recurrent infections, right?

I'm worried that since it's low, my other results won't be accurate (for thyroid, lupus, etc.). I have read posts about members having "normal" thyroid panels, but still feeling hypo- or hyper-thyroid and having symptoms. Thoughts on this?

I was reading somewhere that low IgA means an increased chance for food allergies and intolerances, but of course, now I can't find where I read that...

The doctor has prescribed Flagyl for me, and I'm kind of confused about that...it's prescribed to fight bacterial infections, though I don't think I've "got" anything right now. Is this just a precautionary thing to help my intestines?

I have a follow-up appt. next Wednesday. I am requesting copies of my labs.

What questions should I ask?

What do I need to pursue?

Does anyone have low IgA/IgA deficiency (are they the same thing?) and what has that caused you?

[ravenwoodglass]

(I also posted this in a separate topic called "Low Serum IgA.")

I got a call from the doc's office today, and spoke with his nurse. My test results are back, and everything was "normal" (hormones, thyroid, nutrients, no lupus) except serum IgA, which was low. I know that low IgA can mean the possibility of celiac, since other tests in the celiac panel are meaningless if serum IgA is low. Low IgA also means I'm at risk for GI problems, autoimmune diseases, and recurrent infections, right?

I'm worried that since it's low, my other results won't be accurate (for thyroid, lupus, etc.). I have read posts about members having "normal" thyroid panels, but still feeling hypo- or hyper-thyroid and having symptoms. Thoughts on this?

I was reading somewhere that low IgA means an increased chance for food allergies and intolerances, but of course, now I can't find where I read that...

The doctor has prescribed Flagyl for me, and I'm kind of confused about that...it's prescribed to fight bacterial infections, though I don't think I've "got" anything right now. Is this just a precautionary thing to help my intestines?

I have a follow-up appt. next Wednesday. I am requesting copies of my labs.

What questions should I ask?

What do I need to pursue?

Does anyone have low IgA/IgA deficiency (are they the same thing?) and what has that caused you?

You need to ask your doctor why he prescribed the Flagyl. You have the right to know what bacteria was cultured to make this drug needed. Also make really sure the one he prescribed is gluten free, I was prescribed this once and the pharm had to order it special for me as the usual brand they had in stock was not safe.

I know the low IGA can cause a false negative on the panel perhaps others will know if the low IGA can effect other testing.

[julirama723]

I called them back and found out it was prescribed as a precautionary measure, in case my intestines have been fighting off bacteria. I don't even want to take the stuff. Especially since there's no proof I have an infection, and giving me an antibiotic "just because" doesn't solve any problems, IMO.

I will check to see if it is gluten-free. I have not started taking it yet.

[nora-n]

I have taken flagyl, and it is nothing dangerous. The lyme patients use it because it busts cyst forms of bacteriae. It kills various small parasites or something in-between bacteriae and parasites. Like giardiasis etc. We had an epidemic og cfs after an epicdemic of giardiasis in a town here.....now because of that, this has made a dnt into the official theory of cfs being all in the head of the patients....

I have read on the thyroid forums for years, but no mention about the low IgA. But I think some of the thyroid antibodies are IgG, like TRAb. Elaine Moore should know more, you can ask her at the hyperthyroidism forum at thyroid. about.com (not the hyper folder in the main forum, but the hyper forum that is entirely hyperthyroidism. even though you might be hypo. The main forum is not so much into autoimmune stuff. Elaine answers everyone but it may take time as she is writing and working.)

nora

[julirama723]

Nora, thanks I will check that info out. What's interesting is that I used to have Graves Disease (it somehow reversed itself, but I guess that's not totally uncommon, especially at the age I had it) and now I'm feeling like my thyroid has gone HYPO instead of HYPER, I don't even know if that's possible...

I'm seeing him on Wednesday and I'll ask about the flagyl prescription. If I take it, I'm paranoid about ending up with candidiasis after it...

[nora-n]

It is common go hypo after graves, actually. Daughter has that too. Half have TPO antibodies too, beside the TRAb antibodies. (the TRAb antibodies normally should be 0, they are only positive during a graves episode. many only have one episode. Normally a graves episode burns out by itself after 18 months so many people get radioactive iodine unnecessarily an d they regret it )

The flagyl is actually used against yeast and gut bacteria overgrowth. Some doctors give autistic kids a course of flagyl and diflucan , like 21 days, toghether with probiotics and coconut kefir. There is even something on youtube about that protocol, and it is online somewhere. Never heard of flagyl causing yeast but I could be wrong. It kills protozoa and things with flagellae.

It might be good to go get it from the pharmacy and have it around in case you want to try the protocol after reading up on it. I doubt you got enough on the prescrition for the full course. Usually they give you only a few days. It is not like the other antibiotics and does not zap your whole normal gut flora I think. I could be wrong.

nora

[julirama723]

Nora, that is VERY interesting about going hypo after graves! I had symptoms of grave's disease for 4 years before I told anyone. Once I started treatment (PTU) I was on meds for about 2 years, then went in for radioactive iodine, meds weren't working. After my test (to see how much iodine I'd need) the hospital called and said my thyroid was completely normal. I was VERY relieved! My mother had her thyroid removed at 14 and has taken synthroid all her life. I did not want that to happen to me!

I picked up the prescription for flagyl, and it's a 10-day course. I didn't start taking it, I wanted to speak with the doctor first. I had an appointment today, and we discussed why it was prescribed--because of my low IgA, and because he thought I'd be at risk for giardiasis because of the drinking water where I work. I explained that I don't drink the water there EVER (I bring a new gallon jug of water to work each day, drink out of my own nalgene bottle) and he seemed fine with my judgement to decline taking the flagyl, and I don't have to take it.

From what I understand, Flagyl is an antibiotic, meaning it kills bacteria (and protozoans/flagellates). My worry is that it would not only kill "bad" bacteria but kill the good stuff too, allowing yeast to take over. Flagyl does not work against yeast.

-------------------------------

Today's appointment went pretty well, I think. I showed the doc my gluten challenge results, and he was impressed with how thorough my efforts were, and very surprised at the dramatic change in my stools. He ordered another celiac panel just to see if my numbers change at all, and I'm getting both an endoscopy and a colonoscopy next week (I've never had a colonoscopy, and since my main symptom is usually constipation, he wants to rule out any other bowel problems). He knows that something is going on, and like me, wants to get to the bottom of it.

I'm feeling very hopeful about all of this!

[nora-n]

Often the radioactive iodine will do the gland in after some years...or, the TPO antibodies that many have.

The aim of radioative iodine is actually to make you normal; they give you a much smaller dose than the thyca patients get and it ought to still work according to the theory. But, in real life the dose is ofte a bit too large and it zaps the thyroid.

I guess your testing dose was the right dose to make your thyroid normal. I think you were lucky. Good you did not get the larger dose...

Gluten triggers both of these antibodies, by the way.

Many people here take thyroid meds, because celiac and thyroid are so closely connected.

Good you got an answer about the reasons for the flagyl, and it was actually suspicion of giardiasis.

Constipation is also a typical celiac symptom. Many have C as the only symptom.

Low IgA is also connected to celiac.

The blood tests are IgA tests, and will be negative. They run the IgG versions of ttg and antigliadin in that case.

Antigliadin IgG will often stay elevated for a up to a year. It might still be elevated since you have been gluten-free so short time I think.

nora

[julirama723]

Oh shoot, I forgot about specifying that I wanted the IgG test. I will call and ask that they do that one specifically (if they haven't already.) Is that all I say? "I would like you to run the IgG celiac panel"..? Or is there a more specific name for it?

Yes, they said the dose would normalize my thyroid but there was always the risk of it going hypo. That thought scared the wits out of me, I did not want to be a pill-popper! Whatever the reason, I'm VERY thankful that it normalized. That was not a fun time in my life.

[nora-n]

The EMA is IgA only (they havet o look at the IgA througha microscope, it lights up and is flourescent) and it is not possible to do a IgG version of it.

The antigliadin has an IgG version, and the ttg too.

just ask that they do the IgG version of these tests.

Here in Europe they do that automatically, they run the total IgA and if it is below range, they do the IgG versions of the tests.

This is kinda tricky, since some people only have one of the tests positive and some will be meissed, and also if one has low IgA but wtill within range, the tests can fall below positive.

Yes, I get it, you do not want to take pills, but taking thyroid hormones is important if you need them. If your ft3 and ft4 are in the lower half of the range, chances are you will need to start on supplemental hormones even though tests are still within range. Just get educated on thyroid, with your history. It is much easier to get treatment for hypo with numbers still within range with your history 8but some doctors just do not "get it")

nora