Confused, Lymph Nodes and Appt

[Ginger38]

I have posted on here several times before, but just a recap, I was tested and had positive TTG-IGA antibodies around 2015. I was told I absolutely did NOT have Celiac and only was intolerant of gluten but to go on a gluten-free diet which I did, but I was also told at one point to not continue a gluten free diet bc my glucose went up.  I have only continued to get worse over the years and so I did my own educating and investigating and decided to go on a gluten free diet, convinced I was misdiagnosed and actually have celiac disease. I felt much better overall. However since I was told it wasn’t celiac I would cheat here and there and I always relapsed and had lots of symptoms. So I went back on the gluten-free diet again, restricted this time. My GP (only after me insisting and begging) ordered the TTG-IGA antibodies again recently.  They are still positive. She is insisting I go to gastro…I let her make the appointment. I know you can’t have the procedure, which I don’t want anyway, unless you are consuming gluten. So I have cheated some here and there over the last month to see what happened in preparation for this appt. I have been so so sick. I don’t know if it all built up or what happened but man I felt like I was dying. The brain fog and pure exhaustion was as unbearable if not more than the GI issues. I could not work the brain fog was so bad. I couldn’t even put words together, it was like a cloud or veil draped over me. I also had some episodes of SVT/palpitations and my anxiety has been out the roof. So I went back off gluten last week and this is the first week I have started to feel better.
 

I’ve also noticed in the last month while cheating pretty regularly that under my armpits have been sore feeling. I’m wondering if this is a reactive immune system thing (assuming this is actual celiac). I had it checked out and My GP did not feel any worrisome lymph nodes. It’s just tender feeling in this general area.

I’m so confused and over this. There is No way I can go back on gluten to have an endoscopy. I wasn’t even eating full gluten or on a daily basis. I can’t be that sick again and miss a months worth of work  just to have a “biopsy” to just be told to go gluten-free…I don’t really understand how celiac disease / autoimmune disease works but the way I understand it is that your body is not going to be producing TTG-IGA antibodies when exposed to celiac disease  if you don’t actually have celiac disease. 
 

[Scott Adams]

I think I recall from your other posts that you've been trying to figure this out for a while now, and I believe you've had positive blood tests before, but please correct me if that isn't correct. Also, can you share your blood test results, and the reference ranges for a positive result?

Overall it seems to me like you already have your answer, and if it wasn't celiac disease, it sounds like it would be non-celiac gluten sensitivity, for which there are currently no tests. Either of these conditions require a gluten-free diet.

To get a biopsy the recommendation is to eat at least 2 slices of wheat bread per day for at least 2 weeks beforehand. If you can't do this it probably means you should be gluten-free.

[Ginger38]

4 minutes ago, Scott Adams said:

I think I recall from your other posts that you've been trying to figure this out for a while now, and I believe you've had positive blood tests before, but please correct me if that isn't correct. Also, can you share your blood test results, and the reference ranges for a positive result?

Overall it seems to me like you already have your answer, and if it wasn't celiac disease, it sounds like it would be non-celiac gluten sensitivity, for which there are currently no tests. Either of these conditions require a gluten-free diet.

To get a biopsy the recommendation is to eat at least 2 slices of wheat bread per day for at least 2 weeks beforehand. If you can't do this it probably means you should be gluten-free.

Yes, I feel like I have been traveling down this road for a long time. I have had weak positive tTG IgA tests twice. The first result was 8, which was flagged as high, and the range was in the weak positive (4-10). I just had it retested recently after this rollercoaster gluten free diet I’ve been  on. The level had come down 1 point. That’s it. It’s still flagged as high, weak positive range (4-10). 
 

I feel like I have my answer but it’s like people want “proof” of this to take me seriously as in a doctors official diagnosis. Doctors won’t even entertain it as a diagnosis in my medical history without “proof” but I truly don’t want to make myself so sick I can’t function or work and I am in the ER with cardiac palpitations/ SVT just to have a biopsy that will hopefully get some damaged tissue. Not to mention I cant afford surgery. 

My GP set up a gastroenterologist appointment next week but I don’t see a real benefit of going. I’m honestly afraid of getting told I definitely don’t have celiac even with a positive IgA twice and going down the same rabbit hole all over again 

[Scott Adams]

I know this study focuses on children, but I suspect we'll see more studies like this that may also link celiac disease to chronically "weak positive" tTG IgA results in adults:

 

[Ginger38]

26 minutes ago, Scott Adams said:

I know this study focuses on children, but I suspect we'll see more studies like this that may also link celiac disease to chronically "weak positive" tTG IgA results in adults:

 

Thanks! Interesting read. I guess all this just confuses me. I thought even a weak positive tTG-IgA indicated celiac disease. I didn’t think there were false positives 

[knitty kitty]

@Ginger38,

I tested wonky on my blood tests because I have diabetes, but anemia can also mess up blood tests for Celiac Disease.

I had a genetic test done, which shows I have two Celiac genes.  

You can have the genes, but some people's genes are not activated, so they don't have active Celiac, just the potential for it.  However, with improvement on the gluten free diet, and the genes, Celiac Disease can be diagnosed.  

Activation of the Celiac Disease genes can be caused by a virus, immunization , antibiotics and thiamine deficiency.  Certain medications (metformin, some high blood pressure medications, antibiotics) can cause thiamine deficiency.

 

https://scrubbing.in/12-signs-you-might-have-a-thiamine-deficiency/

And...

https://academic.oup.com/ajcn/article/111/1/110/5637679

Hope this is helpful.

[Ginger38]

10 minutes ago, knitty kitty said:

@Ginger38,

I tested wonky on my blood tests because I have diabetes, but anemia can also mess up blood tests for Celiac Disease.

I had a genetic test done, which shows I have two Celiac genes.  

You can have the genes, but some people's genes are not activated, so they don't have active Celiac, just the potential for it.  However, with improvement on the gluten free diet, and the genes, Celiac Disease can be diagnosed.  

Activation of the Celiac Disease genes can be caused by a virus, immunization , antibiotics and thiamine deficiency.  Certain medications (metformin, some high blood pressure medications, antibiotics) can cause thiamine deficiency.

 

https://scrubbing.in/12-signs-you-might-have-a-thiamine-deficiency/

And...

https://academic.oup.com/ajcn/article/111/1/110/5637679

Hope this is helpful.

I’m a tad confused. This is great information you provided but I’m still confused.. when you say you tested wonky what do you mean?
Again I don’t understand how celiac / autoimmune diseases work but I didn’t think it was possible to have TTG-IGA antibodies present even as a weak positive and not have celiac disease 

[knitty kitty]

By tested wonky, I ate sufficient gluten on purpose before blood testing, but still had low numbers.  

I had Gastrointestinal symptoms, DH,  I knew were from the gluten, but not high antibodies in the blood.  

The level of antibodies in the blood doesn't correspond to the level of damage in the small intestine, either.  

Celiac seems to work on a sliding scale.  If gluten free for a long time, the immune system can take a while to ramp up to the point physical damage in the intestines can be seen. 

It depends on the state of health one is in to begin with.  Some can sneak gluten in once in a while without problems, but others are immediately sick with one crumb.  Every one is different.  

[Ginger38]

6 hours ago, knitty kitty said:

By tested wonky, I ate sufficient gluten on purpose before blood testing, but still had low numbers.  

I had Gastrointestinal symptoms, DH,  I knew were from the gluten, but not high antibodies in the blood.  

The level of antibodies in the blood doesn't correspond to the level of damage in the small intestine, either.  

Celiac seems to work on a sliding scale.  If gluten free for a long time, the immune system can take a while to ramp up to the point physical damage in the intestines can be seen. 

It depends on the state of health one is in to begin with.  Some can sneak gluten in once in a while without problems, but others are immediately sick with one crumb.  Every one is different.  

Thanks, that makes sense. Just still doesn’t answer my lingering question/confusion about my antibody test

[knitty kitty]

@Ginger38,

Sorry, I misunderstood.  

Maybe this recent study will help you feel better.

Clinical Value of Tissue Transglutaminase Antibodies in Celiac Patients over a Long Term Follow-Up

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8465060/

And maybe this one...

Mean platelet volume can indicate dietary adherence and disease severity of celiac disease

https://pubmed.ncbi.nlm.nih.gov/35340308/

Hope this helps!

 

[Ginger38]

46 minutes ago, knitty kitty said:

@Ginger38,

Sorry, I misunderstood.  

Maybe this recent study will help you feel better.

Clinical Value of Tissue Transglutaminase Antibodies in Celiac Patients over a Long Term Follow-Up

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8465060/

And maybe this one...

Mean platelet volume can indicate dietary adherence and disease severity of celiac disease

https://pubmed.ncbi.nlm.nih.gov/35340308/

Hope this helps!

 

Thanks this helps, but I guess what I am trying to figure out is whether or not I would have TTG-IGA antibodies present in my blood if I don’t have celiac. I have understood all along that a weak positive is still a positive. I don’t understand why I would have positive TTG IGA antibodies present / positive in my blood if I do not actually have celiac. 
If I’m not going to resume eating large amounts of gluten to have the endoscopy I don’t see the point in going to the gastroenterologist.

[Scott Adams]

I think pursuing more tests should only be done if you believe you cannot stay on the gluten-free diet for life without being sure that you have celiac disease. There are downsides to a formal diagnosis, like more expensive and harder to get private health and/or life insurance policies. The upsides are that you may get access to follow up care, like blood tests, biopsies, etc., that you could not otherwise get, and this info may help keep you on your gluten-free diet.

The other big issue is that you could still have non-celiac gluten sensitivity, and unfortunately there are not tests for it yet, so you still may need to go gluten-free anyway to avoid symptoms/issues.

[Ginger38]

9 hours ago, Scott Adams said:

I think pursuing more tests should only be done if you believe you cannot stay on the gluten-free diet for life without being sure that you have celiac disease. There are downsides to a formal diagnosis, like more expensive and harder to get private health and/or life insurance policies. The upsides are that you may get access to follow up care, like blood tests, biopsies, etc., that you could not otherwise get, and this info may help keep you on your gluten-free diet.

The other big issue is that you could still have non-celiac gluten sensitivity, and unfortunately there are not tests for it yet, so you still may need to go gluten-free anyway to avoid symptoms/issues.

Thank you for your reply and this great information. I was so incredibly sick just trying to eat gluten here and there to see if I could even go back on it for an endoscopy….  the severe brain fog and exhaustion kept me from being able to work. And then I started having palpitations and SVT again which also kept me from working. I don’t see how it’s even a possibility for me to eat gluten again just to be sick and hopefully get a positive diagnosis from a biopsy.

Eating gluten free is just hard. But one of my main issues is what to tell people about my gluten free life without an official diagnosis of celiac from a doctor. People want proof I guess. It’s like no one believes me 

[knitty kitty]

@Ginger38,

Some doctors will make a diagnosis of Celiac Disease if a patient has genes for Celiac Disease and responds positively to the gluten free diet.  

That's how I was eventually diagnosed.

[C4Celiac]

On 5/4/2022 at 12:51 PM, Ginger38 said:

I was tested and had positive TTG-IGA antibodies around 2015. I was told I absolutely did NOT have Celiac and only was intolerant of gluten but to go on a gluten-free diet which I did, but I was also told at one point to not continue a gluten free diet bc my glucose went up.
 

Your immune system is not going to make antibodies with gluten intolerance 

[C4Celiac]

I don't think there is anything that causes TTG-IGA antibodies except Celiac.

Vitamin D deficiency causes glucose to rise. Vitamin D helps your body produce hormones that regulate your blood sugar. Without it, your blood sugar is more likely to fluctuate and spiral out of control.

Vitamin D deficiency is common with Celiac. 

You can have that tested in a simple blood test.

[Ginger38]

3 hours ago, C4Celiac said:

Your immune system is not going to make antibodies with gluten intolerance 

Thank you, that’s what I have been trying to figure out. It doesn’t make sense to me that I would be making antibodies specific to celiac disease if I don’t have celiac disease 

3 hours ago, C4Celiac said:

I don't think there is anything that causes TTG-IGA antibodies except Celiac.

Vitamin D deficiency causes glucose to rise. Vitamin D helps your body produce hormones that regulate your blood sugar. Without it, your blood sugar is more likely to fluctuate and spiral out of control.

Vitamin D deficiency is common with Celiac. 

You can have that tested in a simple blood test.

Thank you, that’s what I have been trying to figure out. It doesn’t make sense to me that I would be making antibodies specific to celiac disease if I don’t have celiac disease 

I did have a really bad vitamin d deficiency but i got it corrected in time and now I take 5000 I.u. a day. I assume that’s enough if my levels are normal 

[knitty kitty]

@Ginger38,

Have you considered a genetic test to see if you have any of the most common Celiac genes?   

With your symptoms improving on a gluten free diet and genes for Celiac, that can be a positive diagnosis.

Thiamine deficiency can cause high glucose levels.  The pancreas uses lots of thiamine to make insulin.  

Have you been checked for vitamin deficiencies outside of Vitamin D and B12?  

[C4Celiac]

Yes 5k per day is good. Don't take any higher.

1,000 will raise it by like 5 points.

[Ginger38]

12 hours ago, knitty kitty said:

@Ginger38,

Have you considered a genetic test to see if you have any of the most common Celiac genes?   

With your symptoms improving on a gluten free diet and genes for Celiac, that can be a positive diagnosis.

Thiamine deficiency can cause high glucose levels.  The pancreas uses lots of thiamine to make insulin.  

Have you been checked for vitamin deficiencies outside of Vitamin D and B12?  

I don’t think the area I live in offers genetic testing but I would be open to it. I have not had other deficiencies tested