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Undiagnosed Yet, Pre Testing Stages

Mandie28
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Mandie28 Rookie
Mandie28
Posted

Hi everyone, I am new to this site and I signed up because I'm currently in the process to get testing done to see if I have celiac disease or not. I pretty much have all the symptoms and it has gotten fairly bad and it's interfering with my life and getting university school work done is a chore. The bloating, abdominal cramps I can handle, but can't handle the nausea or the constant feeling like I have to throw up (dry heaving all the time), extreme exhaustion either. I dry heave at really horrible smells automatically too. Now the extreme exhaustion is starting to interfere with my daily life. 

I am seeing my doctor and we did the first easy blood test, which was the TTG-igA and the total TTG serum first. I accidently took it a week later which probably was a stupid idea as I have had gluten in my system. Subconsciously I didn't take gluten or ate it a day before. The TTG-igA was 0.5 u/L and total TTG serum was normal & negative. I tried going off gluten two days before and felt better, not energy wise but without the achy joint pain, nausea, vomiting feeling. I am also very extremely itchy after I eat gluten too.

I am nervous that my doctor will say you don't have celiac disease and say we won't be needing to do any other testing for it. As he said to diagnose Celiac disease would be easy. Though from reading on this forum before and other celiac disease association websites that is not the case as their could be false negatives (I think that is my case).

Should I ask for more testing? As I still have every symptom.  Plus I have rashes all over my body too which makes me think Celiac. Every other autoimmune disorder has every symptom like Celiac too. So my plan is too do the testing for Celiac and goo from there. 

Thank you in advance for the feedback, 

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cristiana Veteran
cristiana
Posted
(edited)

Hello Mandie

Thanks for posting, and a welcome to the forum.

I am so sorry you are feeling so unwell at the moment.  Poor you - feeling constantly nauseous is horrible.

You are quite right - celiacs can have negative blood tests and the only way to be sure if that is the case with you is to have an endoscopy, although the bad news is in that case you would need to eat gluten prior to that particular test. 

I hope someone else will chime in and confirm this but I think for the endoscopy you only need to eat the equivalent of 2 slices of normal (glutenous) bread daily for 2 weeks, whereas the blood test requires 2 slices of normal bread for 6-8 weeks.   

But you may instead have something called non-celiac gluten intolerance and that can make people feel very unwell too, without actual damage to their gut.  So if you did decide to have the endoscopy,  and the results for that were negative, that would be the other most likely explanation for your symptoms.   Like celiac disease, the "cure" is going gluten free.

Some people just feel so unwell that, quite understandably, they skip the tests and just give up gluten.   You may prefer to do this.   

Out of interest, do you have any relatives who have celiac disease?   If so, that might build the case for you to have additional testing, should you wish to go down that route.

Cristiana

 

 

 

 

Edited by cristiana
Mandie28 Rookie
Mandie28
Posted
  • Author

Thank you for your response. I do have a family member who is not celiac but is non-celiac gluten intolerant. I am quite certain I have celiac disease as every food that has some form of gluten in it for every celiac disease ingredient to avoid makes me sick. I do not want to completely go gluten free yet so I am 100% sure I do not have it. I have been in the hospital after a week of severe bloating, cramps, nausea etc march 2020 and the doctors did nothing said i had GERD which I have but i know my GERD doesn't make me this sick. The doctors and nurses ignored me. I have started a food log to see what causes me symptoms. 

I am now constantly hungry nothing satisfies my hunger which is now 24/7. I would like to do the biopsy because I know that. is the gold standard for a diagnosis. 

I should of waited and took gluten for 6-8 weeks before taking the test but I didn't want to feel ill daily for work. 

cristiana Veteran
cristiana
Posted

It may also build your case, if your doctor is resisting, to find out if you have the gene that can cause celiac disease.   Perhaps s/he could order that blood test? 

 

Mandie28 Rookie
Mandie28
Posted
  • Author
17 minutes ago, cristiana said:

It may also build your case, if your doctor is resisting, to find out if you have the gene that can cause celiac disease.   Perhaps s/he could order that blood test? 

 

Yes, if he resists on wednesday I will ask to get the gene testing blood test and potentially after if that is positive go do the biopsy. My insurance should cover that too. 

cristiana Veteran
cristiana
Posted
2 minutes ago, Mandie28 said:

Yes, if he resists on wednesday I will ask to get the gene testing blood test and potentially after if that is positive go do the biopsy. My insurance should cover that too. 

Good plan.  And remember, it is important to consume gluten before the endoscopy.  I hope it all goes well.

Mandie28 Rookie
Mandie28
Posted
  • Author
6 minutes ago, cristiana said:

Good plan.  And remember, it is important to consume gluten before the endoscopy.  I hope it all goes well.

Me too, thank you. It's weird that I feel 100% in my gut I have celiac or the non celiac. Usually all my blood tests or MRI, X-Rays etc all come back normal. It's so odd. I asked a doctor who isn't my primary doctor for a referral to see a gastroenterologist due to my last hospital visit and he said he would and haven't heard back from the GI doctor for now two years and that's why I chose to get a new doctor. The 3 doctors I saw in the span of a week when I was in the hospital thought I also had constipation too which wasn't the case. I hope to get a diagnosis for an autoimmune disorder of some sort. Waiting on a referral to see a dermatologist too to call me as well. I've had these issues going on for all my life and been too many of doctors to help me out nothing.

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cristiana Veteran
cristiana
Posted

You are in a very difficult place at the moment but hopefully your conversation with your doctor on Wednesday will get the ball rolling in the right direction.   Keep us posted!

Cristiana

Mandie28 Rookie
Mandie28
Posted
  • Author
48 minutes ago, cristiana said:

You are in a very difficult place at the moment but hopefully your conversation with your doctor on Wednesday will get the ball rolling in the right direction.   Keep us posted!

Cristiana

Yes, I am which is a tough thing. The first blood test for celiac got the ball rolling but hope it continues to keep the balling rolling in the right direction. Will definitely keep you all posted. I thought this forum would be a great place to get feedback. I already was able to see my results online to know it was negative and 0.5 u/L. I have been feeling weak too wondering if that is indicative of a low iron deficiency but from doing research that says otherwise. 

trents Grand Master
trents
Posted

I realize this is knit picking but I believe the term is not non celiac gluten intolerance but non celiac gluten sensitivity which is commonly abbreviated NCGS.

cristiana Veteran
cristiana
Posted
(edited)
6 minutes ago, trents said:

I realize this is knit picking but I believe the term is not non celiac gluten intolerance but non celiac gluten sensitivity which is commonly abbreviated NCGS.

You are quite right, trents and not picky at all.   I think I've made that mistake before!  Senior moment and something I can't blame on coeliac disease for a change, unlike most things!   Thanks for the correction and apologies for the mistake, Mandie.

Edited by cristiana
Mandie28 Rookie
Mandie28
Posted
  • Author
5 minutes ago, cristiana said:

You are quite right, trents and not picky at all.   I think I've made that mistake before!  Senior moment and something I can't blame on coeliac disease for a change, unlike most things!   Thanks for the correction and apologies for the mistake, Mandie.

That is quite alright. Yes it is NCGS, I couldn't remember the correct term as I am always in a brain fog moment. We all have brain fart moments. Lol. 

trents Grand Master
trents
Posted
(edited)

I wanted to straighten that out because the pop media has created a lot of confusion about gluten related medical conditions by their indiscriminate misuse of the terminology. And we have a lot of new members who need to get that clarified in order to understand what's going on.

Edited by trents
Mandie28 Rookie
Mandie28
Posted
  • Author
4 hours ago, trents said:

I wanted to straighten that out because the pop media has created a lot of confusion about gluten related medical conditions by their indiscriminate misuse of the terminology. And we have a lot of new members who need to get that clarified in order to understand what's going on.

Alot of the celiac disease association websites talk about NCGS like canadas does as I live there so i am well informed. Been not reading what the media says as for years its been a fad for those who havent been diagnosed. i joined to get feedback on my testing process to help guide me on the journey. My cousin is NCGS and went throigh the celiac disease biopsy. I dont trust the blood tests at all for a basis of a definite yes or no for celiasc disease. Ive done research off n on for years. I self diagnosed myself with anxiety and depressuon and a doctor didnt bat and eye. My mom has crohnes. NCGS is your sensitive to certain gluten not all of it. I know im sensitive to it all in all food products. Trents i know your clarifying which is great but was expecting to hear your feedback on why I posted like the other commenter crisitiana. I also only read medical journals and studies and found this forum due to symptom questions via google from others. 

trents Grand Master
trents
Posted

If you were off gluten for only two days before testing I doubt that would have had a significant impact on the results. 

Not sure what you are trying to say here, "NCGS is your sensitive to certain gluten not all of it." Gluten is gluten. It is found in wheat, barley and rye. A person with NCGS may have a threshold of sensitivity with regard to the amount of gluten consumed but not what food it is included in.

If you've concluded that you have celiac disease as opposed to NCGS and have no intention to return to gluten consumption for retesting or further testing then you'll just have to go with your unofficial conclusion.

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