Question about test results

[driftwood7]

I had a blood test for celiac done on April 21. These were the results.  

TTG IGA: POSITIVE

TTG IGA QUANT: 20 UNITS

STANDARD RANGE <20 UNITS

Is this a positive? A weak positive? My doctor referred me to GI and he said the blood test was ambiguous. I wasn't expecting to get a blood test when I got it, so I hadn't been eating gluten every single day. I hadn't been avoiding it, just hadn't been eating it every single day. I just had an endoscopy with biopsy done on Tuesday and am waiting on results. I ate gluten every single day in the 4 weeks leading up to the biopsy. The GI said that visually everything looked normal. 

Also, I expressed concern to the nurse prior to the procedure that not enough samples would be taken, and I told him I'd done some research (I found some good peer-reviewed scholarly articles discussing best practices for accurately diagnosing celiac and read through them thoroughly). I asked for reassurance that at least 6 samples would be taken since I know damage can be patchy, 4 from the duodenum and 2 from the duodenal bulb. He (the nurse) just laughed and said, "looks like someone's been googling things" and told me they usually take about two and that if the doctor sees any damaged areas he'll of course biopsy those. I thought the damage wasn't always visible unless under a microscope though. I didn't get a chance to actually ask the doctor how many samples he would take, so I'm hoping this nurse just doesn't know what he's talking about. As much as I don't want to have celiac, I am hoping for the biopsy to be positive or else I will always be questioning why I got a positive blood test. Plus a positive biopsy would explain all my symptoms (gas, bloating, constant flatulence, sudden weight gain/inability to lose weight, iron & vitamin d deficiencies (haven't been tested for other vitamins), fatigue, abdominal pain, some heartburn (not as constant as the gas and bloating though), alternating constipation/diarrhea, itchy elbows (which started as a red rash on both my elbows that looked/felt like a rug burn, suddenly in March - it's cleared up now so that they are just bumpy and super itchy), painful hips/wrists, unexplained tingling in the bottom of my feet, increasingly irregular periods, irritability... I also already have three other autoimmune conditions (hashimoto's, psoriasis, vitiligo). 

I haven't had any gluten since the day before my procedure (so I'm on my 3rd day gluten free) and have noticed an improvement in the flatulence and slight improvement in the bloating, but still dealing with other things. I really just want a conclusive diagnosis so I can move on with my life and feel better. I'm experiencing some anxiety/stress about the results, so afraid that it will come back negative and then I'll be even more confused about what's going on. 

 

[trents]

Villi damage can sometimes be seen in the scoping if the damage is severe enough and the scope used is high resolution. But to rely totally on the GI doc's naked eye observation is unreliable IMO. And the fact that he only takes two samples is concerning. It is also possible you have NCGS (Non Celiac Gluten Sensitivity) rather than celiac disease. They share many of the same symptoms and NCGS is 10-12x more common. But the fact that you have a weak positive from the antibody test after spotty gluten consumption leading up to the test suggests celiac disease to me.

[Scott Adams]

I'm in the camp of there are no "weak positives." A positive test for celiac disease, especially if you weren't eating 2 slices of wheat bread daily during the 6-8 weeks leading up to the blood test, yet it's still positive, is a strong indicator of celiac disease. A gluten-free diet would be your safest bet, and if your symptoms go away on it this should be enough to confirm your diagnosis. 

[driftwood7]

Well, the results came back, and he did only take two samples. I'm so frustrated. I thought I'd figured out what was wrong with me, and now I have no idea if the biopsies were just botched because he didn't take enough samples or if what's happening with me is actually something other than celiac. I hate this. I haven't heard back from the GI about the results, but I have the feeling that he won't be overly helpful. 

 

DUODENUM, DESCENDING-BIOPSY: - DUODENAL MUCOSA WITH PRESERVED VILLI AND BORDERLINE MILDLY INCREASED INTRAEPITHELIAL LYMPHOCYTES (25 PER 100 ENTEROCYTES). 

Note: The pathologic findings are non-specific and may include but not limited to: gluten sensitivity, non-gluten food hypersensitivity, infections (e.g. H. pylori), drugs (e.g. NSAIDs), inflammatory bowel disease, autoimmune disease, immune deficiency (eg. IgA deficiency), and idiopathic (irritable bowel syndrome). 

[trents]

The GI doc will just summarize the results you have in front of you. So, I think your most reasonable course of action is to throw yourself into developing a gluten free lifestyle for several months and see if your symptoms improve.

[Scott Adams]

This points at celiac disease: BORDERLINE MILDLY INCREASED INTRAEPITHELIAL LYMPHOCYTES (25 PER 100 ENTEROCYTES). 

I'm not surprised that they didn't do the biopsy correctly, as we see this complaint often here.

[driftwood7]

  On 5/27/2022 at 6:08 PM, trents said:

The GI doc will just summarize the results you have in front of you. So, I think your most reasonable course of action is to throw yourself into developing a gluten free lifestyle for several months and see if your symptoms improve.

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That's more or less my plan, I guess. But I feel so frustrated that I just want to go binge on all the gluten-filled things this weekend even though I know it will probably make me feel sick. But without an official diagnosis I feel like giving up.

[trents]

  On 5/27/2022 at 6:14 PM, driftwood7 said:

That's more or less my plan, I guess. But I feel so frustrated that I just want to go binge on all the gluten-filled things this weekend even though I know it will probably make me feel sick. But without an official diagnosis I feel like giving up.

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Why do you need an official diagnosis? You have acted reasonably and responsibly in trying to arrive at a definitive diagnosis but a combination of circumstances which include your own decisions, bad timing and medical provider incompetence have thwarted your efforts. Now it's time to take things into your own hands and proceed with your own experiment of going gluten free. Don't waste time and energy bemoaning what you cannot change but spend that same amount of time and energy controlling what you can from this point on.

[driftwood7]

  On 5/27/2022 at 6:28 PM, trents said:

Why do you need an official diagnosis? You have acted reasonably and responsibly in trying to arrive at a definitive diagnosis but a combination of circumstances which include your own decisions, bad timing and medical provider incompetence have thwarted your efforts. Now it's time to take things into your own hands and proceed with your own experiment of going gluten free. Don't waste time and energy bemoaning what you cannot change but spend that same amount of time and energy controlling what you can from this point on.

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That's very true. I just hate grey areas. 

[trents]

  On 5/27/2022 at 6:39 PM, driftwood7 said:

That's very true. I just hate grey areas. 

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I hear you. I think we all hate grey areas. Unfortunately, life is full of them.

[Wheatwacked]

 

  On 5/27/2022 at 6:14 PM, driftwood7 said:

But I feel so frustrated that I just want to go binge on all the gluten-filled things this weekend even though I know it will probably make me feel sick.

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It's so sad the Staff of Life we trusted has been silently beating us over the head.

Here's the question. Would you continue eating paint chips, knowing they might contain lead?

[C4Celiac]

If you eat a piece Gluten free chocolate cake and a piece of gluten chocolate cake you won't taste any difference.

[driftwood7]

  On 5/29/2022 at 9:09 PM, C4Celiac said:

If you eat a piece Gluten free chocolate cake and a piece of gluten chocolate cake you won't taste any difference.

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I don't really care about having to give up gluten or the taste of things or whatever. It's more the frustration of not knowing if I have celiac or not. Like not knowing if I need to be super careful about CC because I could be damaging my body, vs. accidentally having some gluten and feeling sick for a few days and that's all. I couldn't care less about chocolate cake.

[driftwood7]

  On 5/29/2022 at 9:37 PM, driftwood7 said:

I don't really care about having to give up gluten or the taste of things or whatever. It's more the frustration of not knowing if I have celiac or not. Like not knowing if I need to be super careful about CC because I could be damaging my body, vs. accidentally having some gluten and feeling sick for a few days and that's all. I couldn't care less about chocolate cake.

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And the fact that apparently some doctors only care to put the time and effort into listening and doing things right when you've done considerable damage to yourself.

[trents]

But even if you have NCGS it doesn't really change the way you need to approach eating. Having NCGS instead of celiac disease does not mean you have a license to be less than diligent in avoiding gluten. NCGS can still do physical damage to you, just not to the villi of your duodenum. NCGS can do damage in other ways to one's body. I think I am correct in saying one example of that is people with NCGS who experience neurological damage. And even if there is no damage the discomfort it and inconvenience it can cause, even when getting small amounts of gluten, can be a deterrent to being less than diligent in avoiding gluten.

[C4Celiac]

  On 5/29/2022 at 9:37 PM, driftwood7 said:

It's more the frustration of not knowing if I have celiac or not. 

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Your TTG IGA is positive.   just stop eating Gluten.  get tested again in 6 months..    If your antibodies are normal at that time then you have a 100% answer basically.

[driftwood7]

  On 5/30/2022 at 8:44 AM, C4Celiac said:

Your TTG IGA is positive.   just stop eating Gluten.  get tested again in 6 months..    If your antibodies are normal at that time then you have a 100% answer basically.

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Thank you! I don't know why that didn't occur to me. 

[trents]

  On 5/30/2022 at 10:49 AM, driftwood7 said:

Thank you! I don't know why that didn't occur to me. 

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Beware that if you go gluten-free for six months and then go back on it for testing, your symptoms will likely be more intense. We tend to lose whatever tolerance to gluten we once had if we go off it for any length of time.

[KHL]

Hi @driftwood7.. I had a similar journey to yours. What sticks out to me is the rash on your elbows, which is likely dermatitis herpetiformis, which I know all to well. 

There are studies out there that indicate people with DH have less villous atrophy (https://pubmed.ncbi.nlm.nih.gov/27136959/) which could explain why your test results were somewhat inconclusive, in addition to the fact that you may not have been eating enough gluten beforehand. 

You can also pursue the genetic test for celiac disease. If you don't have the genes for it than you know you aren't a Celiac (but likely have Non Celiac Gluten Sensitivity, which requires a gluten-free diet anyhow). 

[trents]

Dermatitis Herpetiformis (DH) is definitive for celiac disease. There is no other known cause for it. So if driftwood7 has DH then there is no question that celiac disease, not NCGS, is the culprit behind the symptoms. So, another Dx rout would be to have the rash biopsied for DH.

[driftwood7]

  On 5/30/2022 at 3:11 PM, trents said:

Dermatitis Herpetiformis (DH) is definitive for celiac disease. There is no other known cause for it. So if driftwood7 has DH then there is no question that celiac disease, not NCGS, is the culprit behind the symptoms. So, another Dx rout would be to have the rash biopsied for DH.

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Do you know if I need to be actively consuming gluten for a skin biopsy to be accurate? Or is it accurate as long as the rash is still there?

[trents]

  On 5/30/2022 at 8:02 PM, driftwood7 said:

Do you know if I need to be actively consuming gluten for a skin biopsy to be accurate? Or is it accurate as long as the rash is still there?

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I do not know the answer to that. It might depend on how fresh the breakout is. Can you describe the rash for us? DH has little blisters in the rash.

[driftwood7]

  On 5/30/2022 at 8:05 PM, trents said:

I do not know the answer to that. It might depend on how fresh the breakout is. Can you describe the rash for us? DH has little blisters in the rash.

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Raised bumps, very itchy. Although initially, in March, it covered a larger area and was very red and burned as well as itched. It's on the outside of both elbows, but it's much worse on my left than my right.

[Scott Adams]

  On 5/30/2022 at 8:02 PM, driftwood7 said:

Do you know if I need to be actively consuming gluten for a skin biopsy to be accurate? Or is it accurate as long as the rash is still there?

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This is a bit of a trick question.

If your outbreak now is DH, then you likely have been consuming tiny amounts of gluten--for example, do you eat in restaurants? If so, you are likely getting trace amounts of gluten in your diet.

Normally you need to be eating some gluten to trigger the DH rash, however, iodine, at least in some people with DH, can also be a trigger. If you are in the category then shellfish, seaweed (think sushi) and other seafoods may also trigger it, but no in all of those with DH.

[driftwood7]

  On 5/30/2022 at 11:53 PM, Scott Adams said:

This is a bit of a trick question.

If your outbreak now is DH, then you likely have been consuming tiny amounts of gluten--for example, do you eat in restaurants? If so, you are likely getting trace amounts of gluten in your diet.

Normally you need to be eating some gluten to trigger the DH rash, however, iodine, at least in some people with DH, can also be a trigger. If you are in the category then shellfish, seaweed (think sushi) and other seafoods may also trigger it, but no in all of those with DH.

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I've only been gluten free for about a week now. We did eat out on Saturday night... At a pizza place... Which as I was sitting there waiting for our food I realized what a bad decision that was, despite them having gluten-free crust. Then I had a couple pieces of pizza and it didn't dawn on me until after that while the crust was gluten-free, my fiance had gotten meatballs on the pizza. I asked the waitress and sure enough there were bread crumbs in the meatballs. I felt very gassy and bloated later that night and the next day and elbows were itching like crazy. They are somewhat calmer today.

I'm sure I'm still getting small amounts of gluten through cross contamination as I've got no problem going gluten-free as far as making sure I'm not purposely eating gluten, but find it hard to justify the expense of replacing any cooking gear (everything not glass or stainless steel needs to be replaced? Or did I hear wrong?) without an actual diagnosis. I'm also still learning about cross contamination. Is it true I can get glutened by kissing my fiance after he's had something with gluten?

But is it also true that it can take DH a while to clear up even after going totally gluten-free?