Labs highly indicative, endoscopy this week...what questions should I ask?

[HilaryM]

Hi all!
So glad to find this forum to learn and ask questions. I've been on a journey of trying to figure out "what's wrong with me" for years...and finally had a doctor suggest celiac may be the root of the issue. I've had thyroid issues since I was 14 (38 now), infertility and weird antibodies, never converting with any vaccine I receive (I'm a nurse so constantly having levels tested), muscle/joint pains for unknown reason, digestive issues, skin issues, extreme fatigue, constant sickness - sinus issues especially - the list goes on. I had labs drawn (shown below) and have my endoscopy on Friday. I'd love any insight into what questions I should ask my GI doc before the procedure as well as any further tests I should request (vitamin levels, etc). Thank you in advance!!

Lab results:

IgA: <10 (reference range 66-433)

Deamidated Gliadin Peptide IgG Antibody: 22.89 (reference range 0-4.99)

 

Tissue Transglutaminase IgG Antibody: 151.53 (reference range 0-4.99)

[trents]

Ask the GI doc how many samples he/she will take from the small bowel. Several samples should be taken from both the duodenum and the duodenum bulb because damage can be patchy. However, with your long history of symptoms and high antibody levels I doubt the damage will be obscure. Your total IGA is quite low at ,<10. Low total IGA usually suppresses the other IGA values so no telling how high the tTG-IGA would have been had your total IGA been in the normal range. Welcome to the forum, by the way.

Personally, I wouldn't bother with asking about vitamin and mineral deficiency blood tests. They often are misleading anyway because they only measure what is floating around in the blood rather than what is in the cells and actually getting used. Plus, as you know, the body will rob stores in order to meet critical needs as in the case with calcium blood levels. They will usually be normal in the blood sample even with those experiencing osteoporosis and osteopenia. I personally can testify to that. Since you have suffered with celiac disease for many years you can assume there is significant damage to your SB villous lining and broad spectrum vitamin and mineral deficiencies. Here on the forum we commonly recommend sublingual B12, a high potency B-complex (like they give alcoholics), 5k to 10k of D3, magnesium glycinate (not magnesium oxide since it is poorly absorbed) and zinc. Don't worry about all the B's and toxicity since the common varieties are all water soluble and you pee out the excess. So don't be frightened by yellow pee when taking them. It's normal. And the high amounts of D3, we now know that we were unnecessarily cautious about taking too much D3 and toxicity because it is fat soluble. It takes a lot more to harm you than we used to think.

[plumbago]

First of all, your tests indicate positivity for Celiac. Second, you should know that you need to keep eating gluten before the EGD (are you also getting a colonoscopy?). Third, may as well as for a B12 test just to see if you are absorbing that vitamin and to establish a baseline. You may also ask for a test of Vitamin D, again to establish baseline. Four, ask if they are going to give you an idea of degradation of the intestinal lining (which would be helpful) - they used to call it a Marsh score. Good luck!

[HilaryM]

18 minutes ago, trents said:

Ask the GI doc how many samples he/she will take from the small bowel. Several samples should be taken from both the duodenum and the duodenum bulb because damage can be patchy. However, with your long history of symptoms and high antibody levels I doubt the damage will be obscure. Your total IGA is quite low at ,<10. Low total IGA usually suppresses the other IGA values so no telling how high the tTG-IGA would have been had your total IGA been in the normal range. Welcome to the forum, by the way.

Personally, I wouldn't bother with asking about vitamin and mineral deficiency blood tests. They often are misleading anyway because they only measure what is floating around in the blood rather than what is in the cells and actually getting used. Plus, as you know, the body will rob stores in order to meet critical needs as in the case with calcium blood levels. They will usually be normal in the blood sample even with those experiencing osteoporosis and osteopenia. I personally can testify to that. Since you have suffered with celiac disease for many years you can assume there is significant damage to your SB villous lining and broad spectrum vitamin and mineral deficiencies. Here on the forum we commonly recommend sublingual B12, a high potency B-complex (like they give alcoholics), 5k to 10k of D3, magnesium glycinate (not magnesium oxide since it is poorly absorbed) and zinc. Don't worry about all the B's and toxicity since the common varieties are all water soluble and you pee out the excess. So don't be frightened by yellow pee when taking them. It's normal. And the high amounts of D3, we now know that we were unnecessarily cautious about taking too much D3 and toxicity because it is fat soluble. It takes a lot more to harm you than we used to think.

This is all super helpful thank you! I didn't know that about IgA - I've known I have suppressed IgA levels for over a year now but until a month ago nobody said it could be related to celiac as well. Good grief! At least I know now.  Good to know about vitamins - are traditional pills you can buy at the store ok or do people do more liquid/IV versions of them until there's more healing of the gut?

7 minutes ago, plumbago said:

First of all, your tests indicate positivity for Celiac. Second, you should know that you need to keep eating gluten before the EGD (are you also getting a colonoscopy?). Third, may as well as for a B12 test just to see if you are absorbing that vitamin and to establish a baseline. You may also ask for a test of Vitamin D, again to establish baseline. Four, ask if they are going to give you an idea of degradation of the intestinal lining (which would be helpful) - they used to call it a Marsh score. Good luck!

Honestly I just keep hoping the endoscopy is consistent with the labs - I've been wanting a reason for feeling so cruddy for so long and even though this isn't good news to have celiac at least it's a starting point to feeling better (I hope). Yes, I've been eating ALL the gluten things this week in preparation for it. I'm only doing the EGD - would I need a colonoscopy? Thank you for pointing me in the right direction in terms of terminology to ask for!

[plumbago]

@HilaryM No, you likely don't need a colo.

I was the exact same way about wanting a positive biopsy result. As for vitamins, for B12, I don't take cyanocobalimine, but rather methylcobalamin because it's more bioavailable. You will learn a lot about what works as you start trying different things. Just keep us posted on what you're doing, what's working and what's not.

If there's low or no cost to you, you might as well get a couple of vitamin levels tested.

[HilaryM]

@plumbagoThank you - great to know where to start!

[trents]

Just make sure all your vitamin and mineral supplements are gluten free. Costco is a great place to get many of them. Their Nature Made and Kirkland Signature brands are generally gluten free and will say so on the bottle/package if they are.

Celiac disease affects the small bowel so the upper GI is what you want. However, large bowel and colon maladies like IBS and Crohn's are more common in the celiac population so if you are having other kinds of bowel issues you might want to go for a two for one.

I'm not sure that low total IGA scores are caused by celiac disease but when they are low they can result in suppressed individual IGA scores and give false negatives in results. The analogy would be dropping body weight causing reduction in measurements all over your frame. Some people just seem to be naturally deficient in total IGA and it doesn't necessarily indicate a health problem, at least that's my understanding.

Edited January 3, 2024 by trents

[RMJ]

Someone did a great job testing you - doing the IgG tests because your IgA was low.  

I hope you get a definitive answer from the endoscopy! Damage to villi can’t always be seen during the endoscopy - it depends on the magnification of the endoscope.  So if the doctor says he didn’t see any damage don’t lose hope for a diagnosis, the histopathology on the biopsies may be different from the visual observation.

[HilaryM]

@RMJ yes my primary is amazing - sadly my insurance changed and I have to leave her That's good to know - I didn't realize that there may be a difference in pathology vs what they see. Do they typically take time to test samples or is that done during the procedure under a microscope? Perhaps this differs depending on where you go? Thank you!

[RMJ]

19 minutes ago, HilaryM said:

@RMJ yes my primary is amazing - sadly my insurance changed and I have to leave her That's good to know - I didn't realize that there may be a difference in pathology vs what they see. Do they typically take time to test samples or is that done during the procedure under a microscope? Perhaps this differs depending on where you go? Thank you!

They fix and stain the samples so it takes a few days to get results (or weeks if they’re really slow).