plumbago

Not to get too gross, but there are enzymes in stool that are irritating and perhaps causing itching. A good remedy is a bidet or bidet-type hose. That will do the trick for sure.

5 minutes ago, trents said:

"Deamidated gliadin peptide (DGP IgA and IgG): This test can be used to further screen for celiac disease in individuals with IgA deficiency, which affects 2-3% of patients with celiac disease, or people who test negative for tTg or EMA antibodies. IgA deficiency in a patient may be indicative of other diseases that may cause villus atrophy, such as giardiasis, small-bowel bacterial overgrowth (SIBO) or common variable immunodeficiency (CVID).2

While it is very rare, it is possible for someone with celiac disease to have negative antibody test results. If your tests were negative, but you continue to experience symptoms, consult your physician and undergo further medical evaluation." from https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

I wonder if you have IGA  deficiency.

 

Her ttg-igg test was positive, weakly positive, but positive.

what were the letters before ttg? And what is the reference range?

That's weird, right? Based on everything you've posted and answered, that would not be a positive Celiac case. Are we missing something?

I would insist on some clarification. Me in your shoes, I'd fax a letter to the practitioner, along with a copy of the tests, asking for the reason behind the positive diagnosis, and clarification.

Next steps depend on getting an accurate diagnosis. This, to me, is not it. Others may chime in with their opinions.

16 minutes ago, kshuf said:

My adult son saw a primary care physician because of symptoms - gas, bloating, diarrhea, constipation, etc. The doctor ordered blood tests. The report reads:

Endomysial Antibody IgA01 Negative

tTG IgA01  3 U/ml 

Immunoglobulin A, Qn, Serum01 188 mg/dL

This report was accompanied by a letter saying, "You have celiac disease and should follow a gluten free diet."

Nobody in our family has ever been diagnosed with celiac, so there is not a strong genetic component.

We are very confused. What is the next step for him?

Can you put the reference ranges for the three tests? Was ttg igA positive or negative?

45 minutes ago, LoisT said:

Shock of my life when I was diagnosed with Celiac last year. WHA? I was 66 years old, and never had had a single symptom of the disease. “Possible Celiac” showed in a complete metabolic blood panel I’d had, which was done for something else entirely, then the endoscopy and, voila, Silent Celiac. Okay, I read up on things, I’ll play along, but HOW will I ever know how I’m doing? Will I need annual endoscopies, what? 

Annual? No! But you ask a good question.

You can do regular antibody tests to gauge if you've "been glutened," which can over time damage the lining of the small intestine, as I'm sure you know by now. I repeated an endoscopy last year (my second one in 10 years just so you know). I did have symptoms on diagnosis and biopsy so I was able to tell that I had improved.

Without symptoms, we are all curious to know what led the provider to do a celiac panel. Were you deficient in some vitamins? What on a CMP leads a provider to think "possible Celiac?" Please do share!

Plumbago

In my experience, doctors are very good at noting damage to the crypts and it usually aligns to what is found at biopsy. But users coming after me will tell you the opposite, most likely. And technically, they are correct. Your case may also be a bit different. In any case, please do keep us updated and thanks for coming back and posting.

I had second Moderna shot in mid-January. I had nausea, headache, fatigue and myalgia at 18 hours in. Then like a miracle it went away. Thank you vaccine makers.

Hi,

Hopefully you will be talking to the medical professional who ordered these tests! But my notes say, "If both DGP are high, celiac disease almost certain." Your doctor - or maybe others on here - may be able to tell you why the Ttg was neg but the DGP positive and what all that means. Good luck!

2 hours ago, trents said:

https://www.frontiersin.org/articles/10.3389/fnut.2019.00162/full According to this fairly recent survey study, the waters are still muddy with regard to non CC oat protein causing inflammation. There are some in vivo studies that suggest it could if sufficient quantities are consumed but it is unlikely anyone would eat that much oatmeal. That's one thing I took from the above linked article.

Thanks. I am reading now, but can't get past the first sentence!

While oats have attractive nutritional properties that can improve the quality and palatability of the restrictive, low fiber gluten-free diet,

gluten-free diets are not low fiber. What's up with that?! I will keep reading....

3 minutes ago, trents said:

I would think so, albeit there are always those atypical cases where antibodies are normal but people still have villi blunting.

Thanks. Do you have evidence that you can post that oats throws the antibody levels off?

1 hour ago, Renee813 said:

 

Is it normal for your deamidated gliadin IgA to be high? All of my blood work came back fine 

It is not.

It's good that your other bloodwork came back fine.

1 hour ago, trents said:

Not specifically but it should throw the same antibodies as gluten and the same symptoms. So if eliminating oats makes improvements no those things there is the test.

Would normal antibodies, then, exclude oats as a potential problem?

2 minutes ago, Renee813 said:

My diet did change but I’m not fully gluten free, and my vit d3/iron levels were fine. I was also tested for my thyroid level which were fine as well 

Ok, thanks. I think it's standard practice that if any one of the tests on a celiac disease panel are positive, it's considered celiac, but check with your doctor. More than one test on my panel was positive, but before going gluten-free, I insisted on a repeat test a month later which showed more or less the same thing. Then I got the biopsy, which was positive.

On 4/23/2021 at 10:08 AM, trents said:

And for about 10% of celiacs. oat protien (gluten free oats) harms the gut

Do you know if there is a way to test for this?

Renee,

According to the notes I have taken since my diagnosis over 10 years ago, "if both DGP (IgA and IgG) are high, celiac disease is almost certain."

In your case, only deamidated gliadin IgA was high. Your other tests were negative. Hopefully, others will weigh in with their good perspectives. Did you at any point, start going gluten free? How are your vitamin levels (D3; B12; iron)?

39 minutes ago, Anonym said:

To the first question, according to the biopsy in the early 2010s and the yearly serology results after that I was responsive at least for 8 years. I dont have the information about the exact Marsh level from the biopsy, but the doctors back then assured me I was healing.

To the second, I did not have and do not currently have any symptoms. I had low hemoglobin levels when I was young but not anything more than that. Despite not having any symptoms the celiac disease was confirmed with a biopsy (I was tested only since the celiac disease is prominent in my family / extended family). Currently, the ttg iga (test run two times in two different labs) and ema iga (test run once) are the signs currently pointing to a refractory celiac disease, since the chance of wrongly digesting gluten can pretty much be ruled out. I am going to have a biopsy in a next month to confirm the damage in the glut.

Thank you for all of the tips! I assure you, I am one of the diligent gluten free persons around there 😀 I have had some diet mistakes when I first was diagnosed, but after that eating gluten free has become a sort of a passion / obsession for me, and I have read and googled pretty much every ingredient I consume. I will try to document the upcoming journey here, so that my experiences or diet experiments could be of help to others finding themselves in a similar situation.

Great, please do let us know. And yes, you certainly sound more diligent than I was, at your age. Last (ish) question - are your total IGA levels normal? Apologies if this has already been addressed.

I am not an expert at all on celiac disease, and know just enough to manage my own condition. According to my book Recognizing Celiac Disase: signs, symptoms, associated disorders and complications, refractory "sprue" (celiac disease) is not responsive to a gluten-free diet. But yours was, at least for a number of years, right?

Just so I understand your current situation, you are not having any symptoms? (Question: did you have signs or symptoms prior to being diagnosed with celiac disease, if you or a parent can remember?) And the only current sign that you think may pointing to refractory celiac disease is the elevated ttg ig and elevated ema iga?

Me in your position, I am not sure I'd start steroids without either an expert opinion from a good doctor or GI specialist or another colonoscopy (from your OP, I see you will have another biopsy in 4 weeks). Just to cover all my bases, I'd also take a double and triple look at the tests and maybe the lab just to make sure there were no errors either in the lab or in documentation.

ADD: My diagnostic test reference book is limited on the celiac disease antibodies, but it does say, severe lactose intolerance can cause elevated gliadin antibodies. You didn't mention those (if I recall correctly), and if you had severe lactose intolerance, I can only imagine you'd have known! One other thing, though I never eat it, I only recently discovered or more likely re-discovered that couscous is not gluten free. That is not something that, me personally, I would have known enough to investigate before eating when I was 26! You sound mature and knowledgeable, but I only mention this in the event that there may be things you are still consuming (long shot: beer?) that are not gluten-free.

1 minute ago, Anonym said:

The tTG was "stable" in the range from 6.9 to 9 U/ml for the years 2010-2018. Then there was a 3 year break from measuring it. Now, in early 2021, the tTG was 28 U/ml, and 2 months later 42 U/ml. The sudden spike from the "stable" range has lead me to believe that in cant be contributed to type 1 diabetes.

Maybe not. How well has your diabetes been controlled?

12 hours ago, Anonym said:

Thank you for your answer!

I have a couple of counterpoints to that. I do not have medical education so I might have gotten some things wrong, but isnt the EMA IgA highly specific to gastro intestinal damage? At least in my country, these serology results (both tTG and EMA up ~10-fold) are enough to have a diagnosis to untreated celiac disease.

Further, at least the tTG has been in a stable range up just to 8-9 for the last ten years. Now that it has suddenly spiked my own reaction was to immediately think of refractory celiac disease.

Yes, EMA-IgA is highly specific to GI damage.

EMA stands for antiendomysial antibodies, which are antibodies produced by the body that attack the body's own tissue. When the EMA-IgA is positive, the patient almost certainly has celiac disease.

Second, it's quite likely I'm not understanding something. In your response to me (above), you said your "tTG has been in the stable range." But in your original post, you said

14 hours ago, Anonym said:

Despite a strict gluten free diet, my tTG IgA levels didnt normalize. However, a biopsy after two years of the original diagnosis confirmed that the healing had begun. The normal range for the utilized tTG IgA test is from 0.0 - 7.0 U/ml. My IgA hovered around 8-9 for the following 10 years, before finally in 2018 dipping below the limit at 6.9 U/ml. Not much was thought of this, as it was presumed to remain a little high due to the coincidental diabetes condition. Thus, the biopsy was never renewed.

Following this, the tTG IgA test was run again in early 2021. To my surpise, the result was 28 U/ml.

So, I'm not sure what to make of that difference. At any rate, you did understand that the ttg IGA can be high due to diabetes.

I hope you get to the bottom of it. Good luck!

Plumbago

@Anonym

I should have been more precise. What I should have said is that ttg-iga is often elevated in cases of diabetes, not (necessarily) refractory celiac disease. Apologies.

19 minutes ago, Anonym said:

Here is my question. Is there anything other than refractory celiac disease which could explain these results?

Yes. Diabetes.

Also, do you know about allergies? Could you have a wheat allergy? Celiac is an intolerance to gluten. At least it's some good news from the scope and biopsy, but yes, as advised previously, get that blood test (the order actually is, blood test first). Get the complete Celiac panel, not just one or two. Good luck. Let us know.

Your doc may be thinking the bloated stomach is related to SIBO (small intestine bacterial overgrowth), I don't know. That is likely what the xifaxan was prescribed for.

Looks like you've gotten some good feedback. Best of luck.

Yes, as I say (re: Trents' comment), there are arguments about how much emphasis to put on the scopist's eye. If biopsies are taken from healthy tissue, but the gastro saw damage, the report from pathology could result in a false negative. But a gastro who sees damage will be taking biopsies from the tissue he/she sees as damaged. IMO, you need both the gastroenterologist's eye and the pathology. But for sure the gastro can in fact see damage oftentimes.

The biopsy tells you more about the damage, if any, in general, and in particular any damage not visible to the gastroenterologist.

1 hour ago, JenniK said:

Can we talk about what this idea of healing the gut actually means for celiacs?

Absolutely! You will likely get a range of opinions!

1 hour ago, JenniK said:

And when you say “cured your celiac”, does that mean a person can go back to acting like a non-celiac?

You will likely not get a range of opinions, but some definitively distinct ones! In my opinion, I would say no that does not mean a person can go back to acting like a non-celiac.