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Mommabearof3

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Mommabearof3 Rookie
Mommabearof3
Posted

I can't wait till testing is over. My bloods came back negative, but it turns out they didn't run a full panel so the scope is my last chance for a diagnosis at this point. I don't care even if it comes back negative, the first thing I'm doing is cutting a lot of crap, including gluten, from my diet to try to improve my stomach.

I'm in so much pain today because I'm stopped up, after months of D. I haven't taken anything or changed my diet, so no clue why this is happening now :-(

Liz

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icelandgirl Proficient
icelandgirl
Posted

I can't believe they didn't run a full panel...How frustrating! Are you thinking about having the do the rest of the bloodwork? You are doing so great hanging in there with all of this waiting. Please let us know how the biopsy goes.

Mommabearof3 Rookie
Mommabearof3
Posted
  • Author

It is frustrating. I thought I was waiting for more results to load to my online account, because they were were also suposed to run a free T4 which they apparently didn't.

They only ran three celiac tests (the two deaminated iga and igg ones andthe tissue trans...whatever that long word is...iga) and a total iga. IGA came back at 332, with the range being 66 to 344. So I'm not IGA deficient, but they didn't test total IGG.

I don't even know if I should push for additonal testing or what. I looked at the lab guidelines on tests and they do not offer any other celiac tests but these three. I don't know if it's worth seeking out another doctor or just get the endo done and do the diet anyway.

I don't "need" a diagnosis. As an example, I have a pretty severe gastrointestinal reaction to straight up eggs. Worse then my regular reaction to things I eat. I figured it out on my own, and when asked at doctor appointments or past hospital stays, no one has ever questioned me on it. They just mark my chart as "egg allergy" and we move on. Only one nurse ever asked me what happens when I eat them, I told her about the 4 plus hours I will be in the bathroom and she just said, yeah I'd stay away from them too.

Liz

SMRI Collaborator
SMRI
Posted

The total IgG is less important than the total IgA.  If your TTIgA/IgG's came back negative with a normal IgA, that information is about as accurate as you can get.  Now, if you have symptoms of low IgG, that might be a test to ask for.  Are you sick all the time with colds, pneumonia, bronchitis, severe sinus infections, etc. that need 3 or 4 rounds of antibiotics to clear?  The GI stuff could be low IgG subclass 3 but that portion of the overall IgG is so small that it won't alter the overall IgG level.  I'm assuming they have done food allergy testing?

Mommabearof3 Rookie
Mommabearof3
Posted
  • Author

Thanks for that info. I have multiple sinus infections, ear infections, severe bronchitis requiring antibiotics, steroids and nebulizer treatments throughout the year. I saw an ent a month ago because I've had multiple ear infections in the last 2 to 3 years after 25 years of none and he said it was caused by allergies but did not offer any testing, just gave me allergy medicine.

I've always had odd occurrences of illness, 2nd grade I had strep throat 8 times in the school year, I'd get better and 5 days later I would have it again.

I also had mono when I was 14 and that completely killed my entire system for years.

Liz

SMRI Collaborator
SMRI
Posted

Thanks for that info. I have multiple sinus infections, ear infections, severe bronchitis requiring antibiotics, steroids and nebulizer treatments throughout the year. I saw an ent a month ago because I've had multiple ear infections in the last 2 to 3 years after 25 years of none and he said it was caused by allergies but did not offer any testing, just gave me allergy medicine.

I've always had odd occurrences of illness, 2nd grade I had strep throat 8 times in the school year, I'd get better and 5 days later I would have it again.

I also had mono when I was 14 and that completely killed my entire system for years.

Liz

 

I would make an appointment with an infectious disease doctor.  Given your Celiac testing came back negative, it's possible with your symptoms that you issues are immune related and not Celiac.  They should test your full IgG as well as the 4 subclasses.  I'm assuming you are old enough to remember the movie "Boy in the Plastic Bubble"  that is the same condition as the immune deficiency, an extreme case of it. With the upper respiratory symptoms, you are probably low IgG subclass 2 and the GI stuff is possibly low subclass 3.  Your overall IgG levels could be, and probably are, "normal" but since subclass 1 is the biggest, you need the subclasses tested as well.  If you were subclass 1 deficient, you would be in the hospital for a couple weeks with most of those above illnesses needing IV antibiotics.  I don't know where you are located but I'll suggest again going to Mayo for a complete work up vs having a test here, a test there and getting to the bottom of your symptoms.

Mommabearof3 Rookie
Mommabearof3
Posted
  • Author

I would make an appointment with an infectious disease doctor. Given your Celiac testing came back negative, it's possible with your symptoms that you issues are immune related and not Celiac. They should test your full IgG as well as the 4 subclasses. I'm assuming you are old enough to remember the movie "Boy in the Plastic Bubble" that is the same condition as the immune deficiency, an extreme case of it. With the upper respiratory symptoms, you are probably low IgG subclass 2 and the GI stuff is possibly low subclass 3. Your overall IgG levels could be, and probably are, "normal" but since subclass 1 is the biggest, you need the subclasses tested as well. If you were subclass 1 deficient, you would be in the hospital for a couple weeks with most of those above illnesses needing IV antibiotics. I don't know where you are located but I'll suggest again going to Mayo for a complete work up vs having a test here, a test there and getting to the bottom of your symptoms.

Thanks for the info, it looks like I have some stuff to look up so I can understand igg and the immune system more. Yes, I remember the boy in the plastic bubble and I've often joked that I needed to be in one because I catch almost everything. I even had the chicken pox twice because the first time I didn't build up enough of an immunity to it.

I can't afford a trip to the mayo clinic unfortunately. I'LL hopefully know more after my testing Monday and I'm planning on still doing an elimination diet after testing in order to pinpoint what is bothering me.

Liz

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