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EenieNeNe

Immunoglobulin A and Gliadin IGA high

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Welcome!  

You do have strange results as the TTG tests typically catch celiac disease.  But, you are like me!  I only get a positive on the DGP IgA even on follow-up testing.  Your result is very very high, but that does not always correlate with the degree of intestinal damage.  Mine was barely positive, yet I had a Marsh Stage IIIB on my biopsy.  The higher IgA shows that the IgA test for celiac disease work and that you have some autoimmune issues going on.  I also have Hashimoto's Thyroiditis, so my result was very high.  Do you have any other autoimmune issues?  

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Sorry, I missed one when I was typing it out:

Transglutaminase IGA -0.5 (normal)

I am really new to this and have no idea what marsh stage means but am pretty sure I have Hashimotos, I am seeing an Endocrinologist for that next month but decided I should test for this on advance.

Nene

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35 minutes ago, EenieNeNe said:

Sorry, I missed one when I was typing it out:

Transglutaminase IGA -0.5 (normal)

I am really new to this and have no idea what marsh stage means but am pretty sure I have Hashimotos, I am seeing an Endocrinologist for that next month but decided I should test for this on advance.

Nene

I too, have Hashimoto's.  You should ask for thyroid antibodies and not just T3, T4, and TSH as those might fall into normal ranges yet your antibodies could be high.  

I have not found anything about why I continue to test negatively on the TTG except for small children who can have a negative TTG yet a positive DGP (and I am not a small child).  My GI's have no explaination either.  

(Good catch PinkyGurl!)

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My regular doctor told me I probably had Hashi's but wouldnt do or suggest anything more than increasing my thyroid meds every few months.

It was a 3 month wait to see the Endo a friend recommended, the appt with the Endo was to work on Thyroid issues and will most likely have the full panel done then.

In the meantime I started researching hashimotos on my own and seeing tie ins to gluten issues and I have family members with gluten issues so decided to have allergy testing done first and lo and behold I got these results.

I will post again as soon as I have the biopsy results, should be Tues or Weds.

Nene

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Sorry for the delay, but a lot going on lately.

I had the biopsy done and they came back inconclusive but because I am also low in ferratin the doc is not convinced and now wants me to have a colonoscopy as well.

In the meantime i had my appt with the endocrinologist and she is starting me on T3 as well as the Synthroid I was already on and asked me to get a ultrasound on my throat for possible thyroid nodules.

Well thats where I am so far anyhow ?

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12 minutes ago, EenieNeNe said:

Sorry for the delay, but a lot going on lately.

I had the biopsy done and they came back inconclusive but because I am also low in ferratin the doc is not convinced and now wants me to have a colonoscopy as well.

In the meantime i had my appt with the endocrinologist and she is starting me on T3 as well as the Synthroid I was already on and asked me to get a ultrasound on my throat for possible thyroid nodules.

Well thats where I am so far anyhow ?

Sorry that you are in limbo land still!  How many biopsies did they take?  Your DGP was super high and you have low ferritin.  Sure sounded like celiac disease.  But villi damage can be patchy.  What about a pill camera?   It can diagnose celiac disease.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2725375/

https://www.verywell.com/capsule-endoscopy-for-celiac-disease-diagnosis-562692

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He did three but that is exactly what he said as well, that they can be patchy and thats why he wanted to do the colonoscopy to check the last section. He said if he cant confirm with that then we should consider the pill. I am due for a colonoscopy in the next 6 months anyhow so figured I might as well go that route, and my understanding is the pill procedure is expensive.

 

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Can you get a copy of your biopsy report?  The remark that it is 'inconclusive' makes me wonder if your doctor is one who doesn't diagnose unless villi are totally destroyed.  Perhaps a second opinion from another doctor might be a good idea. Ask also about the possibility of a formal diagnosis if the gluten free diet brings those numbers down and gives symptom relief.

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Had the colonoscopy and that came back normal as well so now I guess we do the pill camera.

I sure can tell when I eat something that is heavy in gluten like bread, I get this burning sensation in my lower back that feels like my intestines are on fire and I just feel miserable ?

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4 hours ago, EenieNeNe said:

 

Had the colonoscopy and that came back normal as well so now I guess we do the pill camera.

I sure can tell when I eat something that is heavy in gluten like bread, I get this burning sensation in my lower back that feels like my intestines are on fire and I just feel miserable

 

Hang in there. Even if the tests are negative, you may still have found your answer.  I know how much you will be craving answers and certainty, but remember that once the diagnosis process is complete you can still go gluten free regardless of results and see for yourself if it resolves your symptoms. I had a negative biopsy but will never eat gluten again based on my reactions to it. The diagnosis no longer matters for me, there's no treatment available other than the diet in any case. 

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Thanks, I just appreciate having someone who can offer feedback.

At this point I am debating whether I should do the pill test or not, worried it will be costly. May just do the gluten-free diet and see if I get relief or not, ultimately that is where I need to go anyhow.

Janine

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I decided against pushing for the pill, genetic further testing because the risk reward level didn't stack up. I'd kept a food diary during my challenge and had tracked various symptoms returning as I added gluten to my diet. I already knew it was doing me harm, so all I could gain was the 'official' stamp of approval via a coeliac diagnosis. It didn't seem worth it and the consultant said the same once my negative endoscopy results came in.

 Just make sure that all testing is completed prior to going on the diet. It's harder to go back on gluten after removing it than it is staying on it to begin with! 

 

 

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Consider trialing the diet for six months and then get the celiac panel again.  It's your DGP result drops, you have your diagnosis -- celiac disease or Non-celiac gluten Intolerance (or whatever they are calling it these days!).  But find out the cost of the pill camera first.  It might not be bad at all.  

While the pill camera might catch it, at least you know that you had a positive on blood panel that is directing you to celiac disease, so trial the diet would not be a waste of time.  My 19 year old niece was negative on the complete panel, negative on the endoscopy/biopsies and her colonoscopy was normal.  The pill camera revealed Crohn's, just out of reach for both scopes.  

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One thing the Colonoscopy did reveal was that I had a tortuous colon and that this caused issues doing the test, this was not something that was noted on any of my previous colonoscopies (the last one was 5 years ago). 

Unlike a lot of people with gluten intolerence or celiac I suffer from constipation rather than the other end of the spectrum. I am not clear if that could be partially causing the discomfort I feel but it is definitely more sugnificant when I consume gluten.

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I found out today that the cost of the capsule endoscopy is $1977.00 unfortunately I was also told today that the doctors I had been seeing are not "in network" even though I checked Aetna's website and asked the doctors office before I scheduled my appointments.

So now I am paying 40% of the three procedures instead of 20% and I really dont think I have the option of doing another test, i am already too far in debt.

I am still arguing the point with Aetna but dont hold out much hope when it comes to insurance companies.

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Well I went to a new gastro doc today that is covered by insurance and she said there is no reason to do the capsule endoscopy I should just go on the gluten free diet and see if my symptoms are reversed.

So as of tomorrow I am going to go gluten free, very nervous about this prospect as I have no idea where to even begin.

Going to check into a nutritionist if Insurance will cover it.

Janine

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Great that you found a good doctor at last. Hopefully you will heal quickly and do read the thread that C-lady advised. Ask any questions you needed. The gluten-free lifestyle can take some getting used to but the board is here to help you through the rough patches.

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Janinegrichards@gmail is there a list of ingredients you need to look for, trying to figure out what I can and cannot put in my coffee and already having a tough time.

Normally I use a sugar free/lactose free creamer and vanilla flavoring.

Janine

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You probably want to switch to coconut milk or almond milk products rather than use lactose free. Many of us had to avoid casein for 6 months to a year while our villi healed. 

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