Enlarged tonsil and pain on RHS

[trixiesirisheyes 0]

I have gone on a gluten-free diet. My sister is celiac, my other sister is gluten-intolerant, and I've had belly issues since I was a little girl, Hashimoto's thyroiditis - new - beginning stages, fibromyalgia, a freak heart attack at the age of 47, and moderate-to-severe osteoporosis (I have to do DexaScans every year now, and lost 3/4 of an inch in height in 2 years). I also have an IgG2 deficiency, and several of my other Ig results are low normal. I've had the gluten antibody tests (once) in the past and two endoscopies - all negative for celiac. But, since I've been on the gluten-free diet (because of constipation and bloating for 2+ months), I'm feeling better every day.

Unfortunately (and fortunately), I'm having the celiac panel done on January 5. I know I should be on gluten before the test is done, but for how long?

If I'm celiac or GI, I darn well want to make sure the doctors know it. I'd kind of like to slap them about the head and shoulders with it. The last GI doctor I saw (because of esophageal spasms that felt like a heart attack) told me he thought my issues were psychiatric - wink, wink, nudge, nudge, hypochondria. I told him I'd seen one, who said no, I was not a hypochondriac. The GI doc suggested I get a second opinion (what an arrogant jerk), so I did. Second psychiatrist said, um, no, no hypochondria. They just haven't figured out what's wrong yet. Now they're beginning to figure out what's wrong. Finally.

Can anyone enlighten me on the time frame? Thanks!

[tarnalberry 314]

Three slices of bread (or the equivalent) every day for three months.

Do you *need* a medical diagnosis?

[trixiesirisheyes 0]

Three slices of bread (or the equivalent) every day for three months.

Do you *need* a medical diagnosis?

Hmmm, my testing is in two weeks, not three months. It's being done while I have some other immune testing done. I've been on the gluten-free diet for about 3 weeks. For reasons I won't belabor, yeah, I sure would like to have a diagnosis, especially if I have to go back to the horrible gastroenterologist in our medical group again, so he takes me seriously this time. It might wipe the smug, arrogant look off his face, so he can work on helping me out, instead of putting me down.

[ravenwoodglass 1,345]

Hmmm, my testing is in two weeks, not three months. It's being done while I have some other immune testing done. I've been on the gluten-free diet for about 3 weeks. For reasons I won't belabor, yeah, I sure would like to have a diagnosis, especially if I have to go back to the horrible gastroenterologist in our medical group again, so he takes me seriously this time. It might wipe the smug, arrogant look off his face, so he can work on helping me out, instead of putting me down.

I think your IGA deficiency may impact the blood tests even on a full gluten diet. Be sure to talk to your doctor about that. Also note your reactions to adding gluten back into your diet and share them with your GP. If your feeling better gluten free and get sick when you add gluten back in with celiac in your family that is pretty diagnostic also. In addition if it takes care of your issues you won't need to see that jerk of a GI doctor again.

[gfp 0]

Hmmm, my testing is in two weeks, not three months. It's being done while I have some other immune testing done. I've been on the gluten-free diet for about 3 weeks. For reasons I won't belabor, yeah, I sure would like to have a diagnosis, especially if I have to go back to the horrible gastroenterologist in our medical group again, so he takes me seriously this time. It might wipe the smug, arrogant look off his face, so he can work on helping me out, instead of putting me down.

Getting negative results because you haven't been on gluten long enough though will just give him reason to send you for a 3rd opinion????

It is a bit of a risk but you could make sure your diet is documented and the relevancy of the tests is therefore suspect.

Alternatively, why not send your Doctor to a shrink ... sounds like he has a case of SPA (severe patient aversion).

Ask him how he feels about this? Ask how many patients he has referred to shrinks this year? Ask if he wanted to be a doctor or perhaps his overbearing father forced him to med school ?

[trixiesirisheyes 0]

I think your IGA deficiency may impact the blood tests even on a full gluten diet. Be sure to talk to your doctor about that. Also note your reactions to adding gluten back into your diet and share them with your GP. If your feeling better gluten free and get sick when you add gluten back in with celiac in your family that is pretty diagnostic also. In addition if it takes care of your issues you won't need to see that jerk of a GI doctor again.

It's a specific IgG subclass deficiency specific to upper and lower respiratory infections, of which I have many, not IgA. Thank goodness the doctor doing the testing is an immunologist, so he already knows.

One of my big reasons for getting the diagnosis, besides not feeling like crap anymore, is to be able to tell Medco, who provides my prescriptions, not to send me medication with gluten in it. I think an actual diagnosis will help me more than a "Since I went off gluten, I feel so much better." They're going to want a note from the doctor.

And as far as the GI doctor is concerned, heck, he already thought I was a hypochondriac even though a psychiatrist said I wasn't. When I told him that going gluten-free had really helped get rid of my esophageal spasms (I believe I was having nutcracker spasms), he just rolled his eyes at me. He won't believe anything but results in black and white, and something tells me he might even be iffy with that. Stupid doctor.

I appreciate your thoughts!

[trixiesirisheyes 0]

Well, I'm glutening up for my testing in two weeks, and I was just salivating in the store. Oooh, bread! Oooh, pasta! Oooh, candy I can't ever eat again. As excited as I am, I'm not looking forward to the bellyache, esophageal spasms, and bloating. I think I will be very mindful of what I'm eating, so I can say good-bye after the testing with a bit of a smile, because regardless, I WILL say goodbye. I will also take notes on how I'm feeling, as someone here recommended. Excellent idea!!

It's been a few years since the first bloodwork, so we'll see. Immune issues and autoimmune issues are cropping up now, so maybe the end of head-scratching is near. Thank goodness the doctor doing the testing is my very perceptive, very receptive immunologist, not the wretched, evil GI doctor. The immunologist told me to go for it with the Enterolabs testing, because my insurance company sure wasn't going to cover anything, including genetic testing. He also recommended I try to gluten-free diet and see how I do.

AND, he doesn't think I'm a psych case at all, especially after he got my family history. Such bliss. It's like medical care in a parallel universe from where I've been living.

I hope two weeks is enough. I did a loaf of bread and mainly frozen dinners, so I wouldn't be stocking up on gluten flour and all, and so I don't have to rescrub the cupboards. After this, my treat to myself shall be a new toaster.

[nasalady 6]

Well, I'm glutening up for my testing in two weeks, and I was just salivating in the store. Oooh, bread! Oooh, pasta! Oooh, candy I can't ever eat again. As excited as I am, I'm not looking forward to the bellyache, esophageal spasms, and bloating. I think I will be very mindful of what I'm eating, so I can say good-bye after the testing with a bit of a smile, because regardless, I WILL say goodbye. I will also take notes on how I'm feeling, as someone here recommended. Excellent idea!!

I hope two weeks is enough. I did a loaf of bread and mainly frozen dinners, so I wouldn't be stocking up on gluten flour and all, and so I don't have to rescrub the cupboards. After this, my treat to myself shall be a new toaster.

Two week will not be long enough. You should be eating *lots and lots* of gluten for at least 3 months, as you were told earlier in this thread. Also, if you really are celiac or gluten intolerant, eating gluten will NOT be pleasurable....it will be torture after the symptoms hit!

My advice would be to either re-schedule the tests for March, or just cancel the testing altogether. Why even bother to go through that pain and suffering if your testing will yield false negatives because you weren't on gluten long enough???

Anything worth doing is worth doing right!!

Of course, you don't have to take my advice.....but I hate to see you waste time and money if the project is doomed to failure from the start.

Good luck!

JoAnn

[trixiesirisheyes 0]

Two week will not be long enough. You should be eating *lots and lots* of gluten for at least 3 months, as you were told earlier in this thread. Also, if you really are celiac or gluten intolerant, eating gluten will NOT be pleasurable....it will be torture after the symptoms hit!

My advice would be to either re-schedule the tests for March, or just cancel the testing altogether. Why even bother to go through that pain and suffering if your testing will yield false negatives because you weren't on gluten long enough???

Anything worth doing is worth doing right!!

Of course, you don't have to take my advice.....but I hate to see you waste time and money if the project is doomed to failure from the start.

Good luck!

JoAnn

OMGosh! After the misery of the last few days, I can't bear the thought of doing this for 3 months, and even more of it, to boot. I have to work - I'm self-employed - and I can't work and feel THAT crappy. It was like my body has been seriously punishing me for going back on gluten. "You want to go back on gluten, do you? Well, here's what I think of THAT!" "OW, Ow! Oh, my belly, oh, my chest, OH, my aching head!!! I'm sorry, I'm SORRY!!!" The worst it's ever been!

Does the fact that I've only been gluten-free for about 3 weeks count, and before that, I was seriously gluteny? I'm having other immunological testing at the same time that has nothing to do with the celiac panel. I'm already immunocompromised. Should I just not care what the results are? This can't go on. I don't even care now if the GI doc believes me. It's been horrible. Today was a gluten-free Christmas with my gluten-free sisters, and the worst feeling I had was being stuffed from all their delicious cooking.

The only money being wasted is the insurance company's - I'm on an HMO. I'm already having follow-up testing on my pneumonia vaccine, which is probably not going to be effective because of my IgG2 deficiency. I'll have to get another kind of pneumonia vaccine.

I have done the Enterolabs testing. I'm waiting for the results.

[nasalady 6]

OMGosh! After the misery of the last few days, I can't bear the thought of doing this for 3 months, and even more of it, to boot. I have to work - I'm self-employed - and I can't work and feel THAT crappy. It was like my body has been seriously punishing me for going back on gluten. "You want to go back on gluten, do you? Well, here's what I think of THAT!" "OW, Ow! Oh, my belly, oh, my chest, OH, my aching head!!! I'm sorry, I'm SORRY!!!" The worst it's ever been!

Does the fact that I've only been gluten-free for about 3 weeks count, and before that, I was seriously gluteny? I'm having other immunological testing at the same time that has nothing to do with the celiac panel. I'm already immunocompromised. Should I just not care what the results are? This can't go on. I don't even care now if the GI doc believes me. It's been horrible. Today was a gluten-free Christmas with my gluten-free sisters, and the worst feeling I had was being stuffed from all their delicious cooking.

The only money being wasted is the insurance company's - I'm on an HMO. I'm already having follow-up testing on my pneumonia vaccine, which is probably not going to be effective because of my IgG2 deficiency. I'll have to get another kind of pneumonia vaccine.

I have done the Enterolabs testing. I'm waiting for the results.

Theresa, I'm sorry....I do understand! I was gluten free for about 2 weeks then went back on gluten. OUCH!! Everything hurt!

I guess I had missed the fact that you had only been gluten free for 3 weeks prior to this. Yes, that actually does make a difference! Your body probably had not had enough time to heal in just 3 weeks, so maybe you'll be OK with just 2 weeks back on gluten.

You should know that even if you were eating gluten for a YEAR, then were biopsied and blood tested, your tests still may come back negative....even if you DO actually have celiac disease! It's easy to miss biopsying the damaged areas if the damage is patchy, and the blood tests have lots of false negatives. Or your blood work may be positive but biopsy negative, and the doc will say, "well, you don't have celiac if your biopsy is negative!"

There are lots of people here on this board who have only tested positive with Enterolab, or never tested positive at all, but have all of the same symptoms as the rest of us.

Of course, I hope you do get your "official" diagnosis, just so that you know what's wrong! But I wanted you to be forewarned just in case.

Best wishes,

JoAnn