Am I Celiac??

[Anniefin]

I was covid+ in early March and thankfully my breathing improved, temp went away, and I’m covid recovered. However bad bad stomach issues, a constant headache, brain fog, and extreme body aches & exhaustion persist.

About 3 weeks ago my doctor suspected Celiac... somehow was triggered?... We started testing... then I lost my health insurance.

I at least have the results from blood testing. I’ve read many forum threads here and see how many of you have learned so much, living with Celiac. I am praying you can share your expertise with me. I’m utterly confused, first of all, though I think it’s the Gliadins and TtG Ab readings that are most accurate for celiac diag, yes? Mine are undetectable... and yet I can’t eat gluten without getting very ill. ...I’ve read a small %age of those with celiac disease don’t get elavated TtG Ab and Gliadins. So what does that mean for me? Ugh. Here are the highlights...

Gliadin AB IgA — 11

Gliadin AB IgG — 2

Tissue Transglutaminase AB — 1

...which I think? looks negative for Celiac... but then there’s my symptoms, triggered when I eat, and I’m constantly sick; worse when I eat bread/pasta etc...  I’ve also read some Celiacs have a faulty reaction to gluten and don’t produce the AB, is that true?  And then there’s:

Gluten (F79) IGG — 23.3 mcg/mL (Range <2.0)

Immunoglobun A — 365 mg/dL (Range 47-310)

Inflammation C-Reactive Protein — 13.3 mg/L (Range <8.0)

Those look Celiac-suspicious, yes? I can’t resolve these with the TtG and Gliadin #s...

Other #s to note:

RBC - a bit elevated, Iron - a bit low, though most Blood Health readings are in acceptable range *except* for Sed Rate, which is connected to Celiac and other diags though I’m not sure how.

Sed Rate by Modified Westergren — 48 (range <20) 

Thyroid #s are a little low but only just. 

WBC is a bit high @12k/uL, notable Absolute Eosinophils 552 (range 15-510)

Please tell me what you think about my #s. Celiac? Gluten sensitive? How do biomarkers for a lupus diag differ from celiac (they’re similar, right? I can’t quite see how doctors interpret for lupus vs. celiac). 

I’m so exhausted. I’ll sadly yet gladly accept a gluten free diet if it means probably safely avoid out of pocket med costs. I definitely cannot eat gluten anymore, though I don’t know if I ought to be concerned about these results and follow up to rule out lupus. Your advice is very much appreciated.

[cyclinglady]

Hi!  I am so sorry that you are ill and are still recovering (for the most part) from COVID-19.  
 

We are not doctors and we can not diagnose you.  You could have celiac disease or Non-Celiac Gluten Sensitivity.  It is possible that COVID triggered it.  Researchers think that maybe a virus can trigger celiac disease.  Only an endoscopy with biopsies can confirm the diagnosis as your results are not clear cut.  Your Immunoglobulin A is just a control test when diagnosing celiac disease.  It just lets the doctor know that any celiac test ending in IgA is valid.  Since you do not have insurance, you might consider trialing the gluten-free diet and see how you feel.  Give the diet six months at least.

A little out of range on your thyroid can make you feel symptoms.  To know if you have autoimmune thyroid, your doctor needs to run thyroid antibodies tests.  
 

You are correct, Bio-markers are comparable sometimes for just about any autoimmune disorder.  

I do not have lupus, but I think it is a diagnosis of exclusion.  I think the only test could be an ANA test.  Learn more:

https://www.lupusresearch.org/understanding-lupus/diagnosis-and-treatment/diagnosis/

but....your doctor ordered the tests.  Can he not follow-through on a conference call?  Let him know you do not have insurance.  Do you qualify for subsidized or Medicaid under the American Affordable Act?  

Edited June 11, 2020 by cyclinglady

[Anniefin]

5 hours ago, cyclinglady said:

Hi!  I am so sorry that you are ill and are still recovering (for the most part) from COVID-19.  
 

We are not doctors and we can not diagnose you.  You could have celiac disease or Non-Celiac Gluten Sensitivity.  It is possible that COVID triggered it.  Researchers think that maybe a virus can trigger celiac disease.  Only an endoscopy with biopsies can confirm the diagnosis as your results are not clear cut.  Your Immunoglobulin A is just a control test when diagnosing celiac disease.  It just lets the doctor know that any celiac test ending in IgA is valid.  Since you do not have insurance, you might consider trialing the gluten-free diet and see how you feel.  Give the diet six months at least.

A little out of range on your thyroid can make you feel symptoms.  To know if you have autoimmune thyroid, your doctor needs to run thyroid antibodies tests.  
 

You are correct, Bio-markers are comparable sometimes for just about any autoimmune disorder.  

I do not have lupus, but I think it is a diagnosis of exclusion.  I think the only test could be an ANA test.  Learn more:

https://www.lupusresearch.org/understanding-lupus/diagnosis-and-treatment/diagnosis/

but....your doctor ordered the tests.  Can he not follow-through on a conference call?  Let him know you do not have insurance.  Do you qualify for subsidized or Medicaid under the American Affordable Act?  

Hi Cyclinglady,  

Thank you for your reply. I agree with everything you’ve said.  

I’m in a predicament & not knowing is stressing me out.  I was so sure this was celiac disease, or gluten-intolerance, but then my bloodwork doesn’t seem to support it, I think but idk — I’m hoping others have had similar experiences with blood work that didn’t support celiac disease, if that’s what mine says, and what their next steps were. 

My doctor suddenly left her practice; I think she would’ve gone over these with me if she could. 

I think next steps include intestine biopsy and ANA testing, I think? Again, I dont know and would love to hear how testing went for others. I’m moving forward with one of my doc’s colleagues, paying $ out of pocket.  I hope folks can help me get as informed as possible so I can be my best advocate with my new doctor, whose expertise is tbd. 

I have started a gluten-free diet. And like I said, not knowing is tough and I’m floored my Gliadans and TtG doesn’t support celiac disease. I’m hoping someone out there has had a similar experience... and are comfortable dropping their opinions. Please know I won’t expect anyone to diagnose me other than a doc., eventually. My heart goes out to everyone who goes through this experience. Thank you for helping guide me through this.

[cyclinglady]

What were the ranges for the TTG and Gliadin tests?  And what is a “Gluten” test (the result 23.3)?    I am not familiar with that test.  Is it an allergy test?  If so, IgG allergy tests are not very accurate (like only 50%) accurate.  There is no gluten allergy, but you can have a wheat allergy.   All grains have gluten.  Only celiacs react to those glutens found in wheat, barley and rye (and sometimes oats...).  an IgG allergy test kind of tell you what your body remembers.  So it reflects many of the foods you eat a lot of.  The EU, Canada and US Allergy groups explain it better:

https://www.aaaai.org/conditions-and-treatments/library/allergy-library/IgG-food-test

Know that some celiacs are seronegative.  In that case, going to an endoscopy is warranted if the GI strongly suspects celiac disease (genes, family history, co-autoimmune disease, malabsorption signs, etc.)
 

Your CRP is very high. Signs of inflammation that could be due to many, many things.  
 

What makes you think you have lupus?  I just read an article this week in the Atlantic, about COVID lingering and maybe even triggering other illnesses like Chronic Fatigue, Fibromyalgia, etc.  Might be worth investigating:

https://amp.theatlantic.com/amp/article/612679/

Whether this is temporary or long term, a good diet sounds like it can not hurt.  Gluten free is safe, provided you do not consume a lot of junk processed food.  Perhaps investigate the Autoimmune Paleo Diet (also gluten free) to jump start your diet.  Scripps in San Diego conducted a tiny study with Inflammatory Bowel Disease patients.  They achieved a 78% remission results on the SIP diet.  Pretty impressive, but more larger studies are needed.  
 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5647120/

While I am diagnosed, my hubby is not.  He went gluten free 12 years before me per the advice of his PCP and my allergist.  The diet worked.  Does he have celiac disease?  We will never know.  There is no way he will go back on gluten for 6 to 12 weeks to get the tests.  The diet works for him.  What nut would adhere to the diet if it did not work?  
 

I hope this helps.  I hope this is just lingering COVID and can resolve.  Unfortunately, know one knows.  This is a new virus and it is not just mild in 80% of those who get it.  
 

I wish you well and my heart goes out to you.  Keep advocating for your health!  

 

 

 

[Anniefin]

 

On 6/11/2020 at 9:55 AM, cyclinglady said:

What were the ranges for the TTG and Gliadin tests?  And what is a “Gluten” test (the result 23.3)?    I am not familiar with that test.  Is it an allergy test?  If so, IgG allergy tests are not very accurate (like only 50%) accurate.  There is no gluten allergy, but you can have a wheat allergy.   All grains have gluten.  Only celiacs react to those glutens found in wheat, barley and rye (and sometimes oats...).  an IgG allergy test kind of tell you what your body remembers.  So it reflects many of the foods you eat a lot of.  The EU, Canada and US Allergy groups explain it better:

https://www.aaaai.org/conditions-and-treatments/library/allergy-library/IgG-food-test

Know that some celiacs are seronegative.  In that case, going to an endoscopy is warranted if the GI strongly suspects celiac disease (genes, family history, co-autoimmune disease, malabsorption signs, etc.)
 

Your CRP is very high. Signs of inflammation that could be due to many, many things.  
 

What makes you think you have lupus?  I just read an article this week in the Atlantic, about COVID lingering and maybe even triggering other illnesses like Chronic Fatigue, Fibromyalgia, etc.  Might be worth investigating:

https://amp.theatlantic.com/amp/article/612679/

Whether this is temporary or long term, a good diet sounds like it can not hurt.  Gluten free is safe, provided you do not consume a lot of junk processed food.  Perhaps investigate the Autoimmune Paleo Diet (also gluten free) to jump start your diet.  Scripps in San Diego conducted a tiny study with Inflammatory Bowel Disease patients.  They achieved a 78% remission results on the SIP diet.  Pretty impressive, but more larger studies are needed.  
 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5647120/

While I am diagnosed, my hubby is not.  He went gluten free 12 years before me per the advice of his PCP and my allergist.  The diet worked.  Does he have celiac disease?  We will never know.  There is no way he will go back on gluten for 6 to 12 weeks to get the tests.  The diet works for him.  What nut would adhere to the diet if it did not work?  
 

I hope this helps.  I hope this is just lingering COVID and can resolve.  Unfortunately, know one knows.  This is a new virus and it is not just mild in 80% of those who get it.  
 

I wish you well and my heart goes out to you.  Keep advocating for your health!  

 

 

 

Hi Cyclinglady, 

I had one entire day of not feeling sick for the first time in a long time. I ate a piece of cake and have been very sick since. I keep doubting what is apparent, that gluten is not my friend. It’s difficult to accept — especially with that darn blood test. 

Thanks again for your insight. Yea, that gluten igg test is a strange one, I think you’re right and it’s part of that allergy testing that isn’t very reliable. The Gliadin and TTG ranges are over 20 and 4, respectively. My #s are practically non-existent! I recently read about IgA deficiency...? Just trying to make sense of this all...lookIng forward to getting a gastro doc.

If I had to guess I’d say this is celiac disease or a gluten allergy, not lupus, but my bloodwork doesn’t support celiac disease or gluten allergy so I `looked up what the high WBC, low RBC, high C-protein, and high immunoglobulin A relates to, and besides celiac disease these are also connected to lupus. I don’t have any of the symptoms that are exclusively lupus, like the face rash, only the ones that are also symptoms for celiac disease. I also read that there’s a high degree of misdiagnosis between the 2. All this got me thinking about lupus, and I doubt this is that, but I certainly don’t know. Soon. Soon I may. The covid is def passed as my lungs are much improved and temp is gone. I’m more than 12 weeks out from Covid diagnosis. That’s interesting that you came across that article. I was blown away that a person can just suddenly have celiac disease and my doc had said that sometimes viruses, even a pregnancy, can trigger it. I didn’t know. I’m keying into gluten-free, paleo-ish, etc. I’ll follow that link now that I’m not curled up in pain in bed, thanks for it. I just found an anti-inflammatory cook book that I might also try. 

Do you know whether keeping a gluten-free diet from now on could affect the biopsy results? I would think the intestines take a while to heal, right? Hopefully so.

 

 

[cyclinglady]

In as little as two weeks, you small intestine can heal enough to show up negative on a biopsy.  You can go gluten free now and if the GI orders an endoscopy, you would have to consume gluten daily for two weeks (6+weeks to repeat the blood tests).  

Your elevated immunoglobulin A is just out of range.  I am no doctor, but mine is over 800.  Not good per my doctors.  We think it is attributed to autoimmune and not cancer.  But your result might just be out of range for your local lab.  So, talk to your doctor about this result.  I can tell you that seeing an IgA result often opens up an unnecessary can of worms, per my doctor.