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Negative Iga Ttg, Should I Do More Testing?

WillametteValleyKali

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WillametteValleyKali Newbie
WillametteValleyKali
Posted

A month ago I found out my hemoglobin was fairly low and I was diagnosed with iron defiiciency anemia. I put some things together in my head (the seemingly random anemia, Hashimoto's disease, a bunch of GI issues, chronic pain and fatigue dx'ed as fibromyaliga) and asked my doctor about the possibility of Celiac disease. She agreed that it could be the problem and ordered the IgA tTg test, which came out just fine. I don't know if she ordered a total IgA and I'm going to call and ask about that on Monday.

 

I was wondering what people think about more tests. I do have an appointment with a GI doc over a month from now. I can't get an earlier appointment and can't switch to anyone else because I'm on Medicaid and this GI doc is the only one nearby who will take that insurance. I'm seriously considering forgetting about the GI appointment and further tests and dropping gluten ASAP and dairy as much as possible, moving toward dairy-free. I want to get that stuff out of my system and hopefully start feeling better! Is it worth it to keep eating food I know is bothering me so I can get more tests? With the negative IgA tTg test would you pursue other tests? I had pretty much decided to just go gluten free and see how I end up feeling in a few months but wanted to get the opinions of folks who have gone through all of this.

 

Thanks!

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deb-rn Contributor
deb-rn
Posted

My results aren't back yet, but I  KNOW  what I have to do.  I talked to my Dr about the upcoming results and asked if a biopsy was necessary, since my little trial really told me I don't tolerate gluten.  He said that negative results are common, so if I felt better without gluten, then I didn't tolerate it!  I am anxious to see what the results are, though!

 

Good Luck!
Debbie

WillametteValleyKali Newbie
WillametteValleyKali
Posted
  • Author

Thanks, Debbie! I'm pretty sure that's what I'm going to do. Anyone else?

SkyBlue4 Apprentice
SkyBlue4
Posted

The Total IGA is an important piece of the Celiac puzzle and will tell you if your tTG IGA result is valid. I would ask if they ran a full Celiac Panel and post all of those numbers here along with the lab ranges.

 

I am newly diagnosed so I don't have much more feedback to offer you but other folks on this forum are extremely knowledgeable and can probably offer more insight.

 

Good luck and I hope you get some answers soon!

w8in4dave Community Regular
w8in4dave
Posted

I'd advise to get the tests done. Once you get the test done. No matter what the outcome you can go Gluten Free. But just remember you need to be eating Gluten to have the test. You have alot of health issues going on. I think a Gluten Free diet will be good no matter what... 

WillametteValleyKali Newbie
WillametteValleyKali
Posted
  • Author

Thanks, friends. I read last night the the total IgA is important to the other test results so I'm going to call and ask about that tomorrow. I think I'm going to go ahead and make another appointment with my primary care doc as soon as she can get me in so she can have the Celiac panel done. Then I can decide about the GI doc when the results from the panel are in. I hate to eat stuff I know bothers me but in the end it's for my health. Off I go to eat gluten, bleh.

w8in4dave Community Regular
w8in4dave
Posted

Yes but as soon as you get the test done you can go gluten free. I think it is very important you do that.

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WillametteValleyKali Newbie
WillametteValleyKali
Posted
  • Author

Yes but as soon as you get the test done you can go gluten free. I think it is very important you do that.

Definitely!

eers03 Explorer
eers03
Posted

I am absent IGA so they relied on certain IGG markers that have a high level of specificity to gluten intolerance.  So, make sure you are not Absent IGA.  If you are, you will need a different celiac blood panel.  If your IGA is normal, your current blood panel should satisfy your purposes.  If gluten free does well for you--testing aside--go for it!

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    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
    • knitty kitty
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    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

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    • lizzie42
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      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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