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Is It Celiacs?

RMay

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RMay Newbie
RMay
Posted

Hi,

 

I have been having abdominal issues for awhile now, and I am so tired of it, and nobody can figure out what's wrong with me.  It's so frustrating :(

 

I am wondering if it could be celiacs? My doctor says the blood test is really expensive, so its better to just "try not eating gluten and see how you feel" - which Ill do but still...

 

Abdominal wise

 

I keep getting pain in my upper abdomen on the right and left side, usually takes turns.  It often feels like there is a knot or something in my intestines.  It hurts but its not terribly painful, more really uncomfortable, especially when i sleep or bend a certain way.

 

I always feel dehydrated.

 

I am always constipated

 

Those are the biggest ones I guess.  Just wondering if the abdomen thing is familiar to anyone else

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notme Experienced
notme
Posted

have you been tested for anything else?  

 

i heard "ibs" for 25 years before i found out it was a *symptom* - i feel ya  :mellow:

RMay Newbie
RMay
Posted
  • Author

have you been tested for anything else?  

 

i heard "ibs" for 25 years before i found out it was a *symptom* - i feel ya  :mellow:

No, everyone is just like "sorry - we dont know what this is"  Im starting to feel like some crazy hypochondriac :(

KristinIrwin Apprentice
KristinIrwin
Posted

RMay,

I know what you mean by feeling like there is a knot in your intestines! Before I was diagnosed I almost always felt discomfort in my intestines like that. I also had constipation as well as a first symptom. I had a lot of pressure and pain my upper abdomen.

All those symptoms are gone now that I am gluten free.

I know I can't say whether you have Celiac or not, but I just wanted to let you know that you aren't alone in those symptoms!

Have you considered getting the blood test despite what your doc says? If you do want to get the blood test, don't go gluten free until you get it because it can mess with the results

Good luck with your health and I hope you get to feeling better! Digestive issues can be so frustrating. Hang in there!

Kristin

RMay Newbie
RMay
Posted
  • Author

RMay,

I know what you mean by feeling like there is a knot in your intestines! Before I was diagnosed I almost always felt discomfort in my intestines like that. I also had constipation as well as a first symptom. I had a lot of pressure and pain my upper abdomen.

All those symptoms are gone now that I am gluten free.

I know I can't say whether you have Celiac or not, but I just wanted to let you know that you aren't alone in those symptoms!

Have you considered getting the blood test despite what your doc says? If you do want to get the blood test, don't go gluten free until you get it because it can mess with the results

Good luck with your health and I hope you get to feeling better! Digestive issues can be so frustrating. Hang in there!

Kristin

 

Thanks for the insights!

 

I am seeing a GI doctor on Fri - hopefully I can get a test or other answers.

 

Does the blood test require any fasting before hand?  How long does it take to analyze the results?

powerofpositivethinking Community Regular
powerofpositivethinking
Posted

the blood tests do not require any fasting, but you must be consuming gluten.  The big "C" was a big problem for me too before going gluten free, but now it's gotten so much better.  Analysis depends on the lab.  I have to use Labcorp and would get blood taken on a Friday and results through my online portal on Monday.  

 

Here is a list of tests to request:

Comprehensive Celiac Panel:

DGP iga/igg

ttg iga/igg

EMA

Total iga serum-this is a control test to make sure you make enough iga to validate the other testing

check out page 12 in this report for testing information:

Open Original Shared Link

notme Experienced
notme
Posted

No, everyone is just like "sorry - we dont know what this is"  Im starting to feel like some crazy hypochondriac :(

yes, we all have crazy hypochondriac syndrome lolz - i had so many seemingly random health problems that nobody connected the dots. i had never even heard of celiac before i was diagnosed.  ("hey.  you have celiac.  don't eat gluten.  see ya!")  

 

the abdomen thing - you could actually *see* my (whatever - food?  gas pockets?) moving around - felt <from the outside) and looked like a baby moving - freaked my husband out LOLZ but if anything made a 'believer' out of him, it was *seeing* my discomfort.   i hope you find your answers (and welcome to the forum :)  )

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KristinIrwin Apprentice
KristinIrwin
Posted

Notme! The same thing happened to me! So freaky

notme Experienced
notme
Posted

Notme! The same thing happened to me! So freaky

 

i know - gives whole new meaning to the phrase:  'food baby' lolz   :blink:

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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
      Son's legs shaking

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    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

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    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      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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