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Confused about my diagnosis- celiac disease

Onemoreceliac
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Onemoreceliac Apprentice
Onemoreceliac
Posted

Hello. f 24

Last year, in January, I did an endoscopy and the results came back with celiac disease Marsh II. I kept a strict gluten free diet over a year and I did again an endoscopy 7 months later after the first one.

Results were saying that my villis are normal, no trace of any problem, everything normal. My gastroenterologist even ask me to do that genetic analysis about celiac disease and it came back that I don't have the genes for that. My doctor was surprised that my results and diet worked so well for me.

Today I talked with another doctor, who happens to have a specialization in nutrition and she looked all over my test results from the past year and said that I don't have celiac disease at all.

I asked how comes that? She said because my biopsy results look too good for a patient with celiac disease, even if I kept a strict diet. So now I'm confused, I also have dysbiosis and currently I'm trying to treat this. She said I maybe have an intolerance to gluten because of my bad microbiome, but definitely not celiac disease.

In January, I also had  vitamin D and iron deficiency (i took suplememts for 3 months and now I'm fine). Maybe they made a mistake with my first biopsy?

What do you think? Now I'm more confused than ever.

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RMJ Mentor
RMJ
Posted

While some people with celiac disease have very slow recovery of villi on a gluten free diet, some people do heal nicely.  Looks like you are one of those.  You certainly know that you should avoid gluten, since eliminating it led to healing of your villi.

Most people with celiac disease have a certain genetic pattern, but there is a small percentage who don’t have the standard celiac genes.

Did you have any antibody tests for celiac disease?  Or just the endoscopy and genetic tests?

Onemoreceliac Apprentice
Onemoreceliac
Posted
  • Author

Yes, 2 weeks after biopsy. (Ttg) IgA and (Ttg) IgG were negative. IgA normal parameters (0,700-4,000) I had 4, 128 g/L and both anti endomisium IgA and IgG negative. 

14 hours ago, RMJ said:

While some people with celiac disease have very slow recovery of villi on a gluten free diet, some people do heal nicely.  Looks like you are one of those.  You certainly know that you should avoid gluten, since eliminating it led to healing of your villi.

Most people with celiac disease have a certain genetic pattern, but there is a small percentage who don’t have the standard celiac genes.

Did you have any antibody tests for celiac disease?  Or just the endoscopy and genetic tests?

Yes, 2 weeks after biopsy. (Ttg) IgA and (Ttg) IgG were negative. IgA normal parameters (0,700-4,000) I had 4, 128 g/L and both anti endomisium IgA and IgG negative

knitty kitty Grand Master
knitty kitty
Posted

@Onemoreceliac,

Was the genetic panel testing only for the presence of DQ 2 and/or DQ8 genes?   Some genetic tests look for the presence or absence of these, the most common Celiac genes.  But, there are other less common DQ genes that code for Celiac.  

You may want to have another genetic test to look for any of the variations for Celiac.

The dysbiosis can be caused by Thiamine deficiency.  The gluten free diet can be deficient in certain vitamins and minerals.  

I found thiamine supplementation and the Autoimmune Protocol Diet very helpful in my own journey.

https://www.hormonesmatter.com/quick-thoughts-bacterial-thiamine-synthesis-dysmotility-and-dysbiosis/

And...

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/

Hope this helps!  Keep us posted on your progress!

Onemoreceliac Apprentice
Onemoreceliac
Posted
  • Author

Thank you for your answer. What are others DQ genes that I need test to run out celiac disease?

knitty kitty Grand Master
knitty kitty
Posted

Here's an article you can share with your doctor...

Identification of Non-HLA Genes Associated with Celiac Disease and Country-Specific Differences in a Large, International Pediatric Cohort

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4807782/

 

Lkiernan Newbie
Lkiernan
Posted
On 12/20/2022 at 3:05 AM, Onemoreceliac said:

Yes, 2 weeks after biopsy. (Ttg) IgA and (Ttg) IgG were negative. IgA normal parameters (0,700-4,000) I had 4, 128 g/L and both anti endomisium IgA and IgG negative. 

Yes, 2 weeks after biopsy. (Ttg) IgA and (Ttg) IgG were negative. IgA normal parameters (0,700-4,000) I had 4, 128 g/L and both anti endomisium IgA and IgG negative

Congrats on your recent negative tests. My daughter recently diagnosed. Positive Antibody IgA & biopsy. This is a new journey for us. I hope the transition is smooth... She is a teenager, which that in itself makes it challenging. I'm encouraged by your diet change & healing/recovery. I hope & pray for healing. Blessings to all & thank you for sharing. 

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