Endoscopy Tomorrow

[KittenPA]

Hey folks.

Celiac is a new rabbit hole for me.  Back in January, my PCP had a regular panel run for my annual checkup (first in quite a few years) and it came back with an iron deficiency. I started on a supplement and she referred me to a GI to rule out internal bleeding, etc.  My GI ordered a more detailed panel and scheduled me for upper/lower, which is tomorrow.

I went to get the more detailed panel a couple of weeks ago. My tTG IgA came back <2 but tTG IgG is >100.  The GI had mentioned Celiac as something he wanted to rule out, but I brushed it off until this test came back. (Thinking back on it, I have always had some levels of stomach discomfort, but I always brushed it off as lactose sensitivity, since we only knew of lactose intolerance running in the family.)

I was prepared to head off to a hematologist after tomorrow’s tests because I figured my iron deficiency was something else.  On the one hand, I’m excited to have an answer to my anemia - I’m a runner, so my VO2 Max is suffering from this.  On the other, my son basically lives on gluten-laden carbs, so this is going to be an adjustment for our household.  My husband has already started purging the house of flour in anticipation of a diagnosis.

Anyway, here’s hoping for some answers.  Is it possible that I’ll know before I leave the surgical center tomorrow, or more likely that it will take a few days for results?

[trents]

Depending on several things like the resolution of the scope used, the extent of damage to the small bowel villi, and the experience level of the physician doing the scope, you may have a tentative answer right after the scoping. Otherwise, the results await the microscopic evaluation of the biopsy by a lab. I hope the GI doc takes several samples from different areas of the duodenum as damage can be patchy. Inexperienced docs may not know to do this.

I hope you have not already started on a gluten free diet as that can invalidate the test results by allowing healing to occur.

[KittenPA]

20 minutes ago, trents said:

Depending on several things like the resolution of the scope used, the extent of damage to the small bowel villi, and the experience level of the physician doing the scope, you may have a tentative answer right after the scoping. Otherwise, the results await the microscopic evaluation of the biopsy by a lab. I hope the GI doc takes several samples from different areas of the duodenum as damage can be patchy. Inexperienced docs may not know to do this.

I hope you have not already started on a gluten free diet as that can invalidate the test results by allowing healing to occur.

I have not started on a gluten free diet. I only received the last part of the blood test results on Thursday, so there really hasn’t been much time to process. Though I guess today is gluten-free just by virtue of having to prepare for the colonoscopy, LOL.

[trents]

Colonoscopy? Are you having an endoscopy (upper GI) or a colonoscopy or both? A colonoscopy is not used to diagnose celiac disease. The part of the intestinal track affected by celiac disease is the part right below the stomach (duodenum). A colonoscopy can't reach that far.

[KittenPA]

1 hour ago, trents said:

Colonoscopy? Are you having an endoscopy (upper GI) or a colonoscopy or both? A colonoscopy is not used to diagnose celiac disease. The part of the intestinal track affected by celiac disease is the part right below the stomach (duodenum). A colonoscopy can't reach that far.

It’s both. I was scheduled for both procedures before the blood work came back and they were trying to narrow down the cause of my anemia.

[Scott Adams]

Let us know how it turns out, and keep in mind that a negative biopsy won't necessarily 100% rule out celiac disease, given your positive blood test. There is also non-celiac gluten sensitivity, for which there is no test yet, but ~10x more people have it than have celiac disease. In summary, you may want to try the gluten-free diet for a few months even it the biopsy outcome is negative.

[KittenPA]

20 minutes ago, Scott Adams said:

Let us know how it turns out, and keep in mind that a negative biopsy won't necessarily 100% rule out celiac disease, given your positive blood test. There is also non-celiac gluten sensitivity, for which there is no test yet, but ~10x more people have it than have celiac disease. In summary, you may want to try the gluten-free diet for a few months even it the biopsy outcome is negative.

It seems like I’m headed down some form of elimination diet regardless of the results of the biopsy. They found eosinophilic esophagitis during the endoscopy.  My doctor told me afterward that it’s a 50% chance that I do have celiac, but we won’t know until the biopsy comes back in a couple of weeks.

[Russ H]

6 hours ago, KittenPA said:

It seems like I’m headed down some form of elimination diet regardless of the results of the biopsy. They found eosinophilic esophagitis during the endoscopy.  My doctor told me afterward that it’s a 50% chance that I do have celiac, but we won’t know until the biopsy comes back in a couple of weeks.

So the EE was diagnosed visually rather than by biopsy? Without a biopsy and exclusion of other causes, that diagnosis comes across as unduly certain. Do you suffer from reflux?

[KittenPA]

11 hours ago, Russ314 said:

So the EE was diagnosed visually rather than by biopsy? Without a biopsy and exclusion of other causes, that diagnosis comes across as unduly certain. Do you suffer from reflux?

Visually, yes, but a biopsy was sent off as well. I do not have reflux.

[Russ H]

10 hours ago, KittenPA said:

Visually, yes, but a biopsy was sent off as well. I do not have reflux.

But no evidence of bleeding, I take it, and the cause of your anaemia is still unknown? So, you could be IgA deficient and not showing up on that test for coeliac, but do show up on IgG.

[KittenPA]

34 minutes ago, Russ314 said:

But no evidence of bleeding, I take it, and the cause of your anaemia is still unknown? So, you could be IgA deficient and not showing up on that test for coeliac, but do show up on IgG.

Correct, no evidence of bleeding.

[KittenPA]

Well, my chart just updated even though it’s Saturday. 
 

“Duodenal mucosa with markedly increased intraepithelial lymphocytes and villous blunting, consistent with celiac disease.”

So it looks like I’m sticking around. 

[trents]

42 minutes ago, KittenPA said:

Well, my chart just updated even though it’s Saturday. 
 

“Duodenal mucosa with markedly increased intraepithelial lymphocytes and villous blunting, consistent with celiac disease.”

So it looks like I’m sticking around. 

Welcome aboard!

[Scott Adams]

This article should be helpful, and you may want to look into a good multi-vitamin and mineral complex that covers all the B vitamin, and Vitamin D.

 

[KittenPA]

17 minutes ago, Scott Adams said:

This article should be helpful, and you may want to look into a good multi-vitamin and mineral complex that covers all the B vitamin, and Vitamin D.

 

I’m waiting to talk to my GI before starting any supplements beyond what I’m already on (iron and C). I am borderline B12 deficient so he had already wanted me to see a hematologist for injections. 

[trents]

1 hour ago, KittenPA said:

I’m waiting to talk to my GI before starting any supplements beyond what I’m already on (iron and C). I am borderline B12 deficient so he had already wanted me to see a hematologist for injections. 

There's really no point in that as the B-vitamins are water soluble and there's rally no risk of overload toxicity. You just pee out any extra not used. We now know that large oral doses of B12 accomplish the same things as injections. To prescribe B12 injections for pernicious anemia tells me the doctor is operating from an outdated knowledge base.

[Russ H]

On 5/30/2022 at 7:56 PM, trents said:

There's really no point in that as the B-vitamins are water soluble and there's rally no risk of overload toxicity. You just pee out any extra not used. We now know that large oral doses of B12 accomplish the same things as injections. To prescribe B12 injections for pernicious anemia tells me the doctor is operating from an outdated knowledge base.

Yes. Needs a large daily dose though (1000 μg) :

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4993789/

[trents]

41 minutes ago, Russ314 said:

Yes. Needs a large daily dose though (1000 μg) :

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4993789/

Correct, but almost every B12 supplement on the market today has that much. They discovered a secondary assimilation pathway that can be successfully utilized with these large doses. The supplement companies picked up on that and since then most B12 supplements are large dose pills. 

[KittenPA]

I appreciate all of the input!

After speaking with my GI yesterday, he doesn’t want me on anything more until I see a hematologist.  Apparently my biopsy showed pretty significant damage and it sounds like he’s concerned about my ability to absorb orally (which is kind of yikes, but I guess we’ll see).  He also mentioned the potential need for an iron infusion - I think we’re really just at “second opinion” territory given the number of deficiencies I have right now.

I need to go for more blood work in the next couple of days to establish my baseline levels to track celiac, which I thought I’d screwed up since I took gluten out of my diet over the weekend…except I managed to accidentally gluten myself yesterday (I have no idea how - it must have been something in the salad I had for lunch).  It’s funny, because I’ve been ignoring my stomach for years.  I mostly put off the feelings I had as gas pains or indigestion.  I have a very high pain tolerance (two kids, no epidurals), so it takes a lot to take me down.

[Russ H]

8 hours ago, trents said:

Correct, but almost every B12 supplement on the market today has that much. They discovered a secondary assimilation pathway that can be successfully utilized with these large doses. The supplement companies picked up on that and since then most B12 supplements are large dose pills. 

I'll pass that on to a friend who has regular injections for pernicious anaemia.

1 hour ago, KittenPA said:

 It’s funny, because I’ve been ignoring my stomach for years.  I mostly put off the feelings I had as gas pains or indigestion.  I have a very high pain tolerance (two kids, no epidurals), so it takes a lot to take me down.

Coeliac disease is insidious, progressing with a gradually worsening constellation of non-specific symptoms and malaise so that the sufferer unknowingly becomes accustomed to being unwell. You have probably had it for many years, and as you recover will realise just how unwell you had become.

[KittenPA]

48 minutes ago, Russ314 said:

the sufferer unknowingly becomes accustomed to being unwell. 

Hah, I mentioned something to my husband after the diagnosis and his mind was absolutely boggled. He didn't understand how I could just be living in constant discomfort.