3 month retest

[glucel]

I lost 36 pounds (180 to 144) over several months after bypass surgery and became constipated last few months.  Blood test and endoscopy indicated celiac.

Negligible health improvement 3 months later so doc ordered blood work and mri on small intestine which I still have not taken. The blood work, however, has me stumped as the tt IGA went up from 189 to 226 even though on gluten diet. On the other hand the 2 endomycial tests improved from Positive to negative. Got the lab report yesterday so have not heard from doc yet. 

There are a couple things that I eat that possibly could have been cross contaminated but other that that strictly gluten free so do not understand why tt iga went up instead of down. Any help appreciated.

[glucel]

My apologies. Senior moment, I blindly missed the decimal point. TT IGA was 22.6 not 226. Seems that I should be feeling better with the improvement so there might be another problem.

[Scott Adams]

I believe you meant that your tTg-IgA levels went up even though you've been on a gluten-free diet, is that correct. If so, are you sure you understand the gluten-free diet fully?

This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):

 

 

[knitty kitty]

Welcome to the forum, @glucel!

Are you still consuming dairy?  

About half of people with Celiac Disease also react to dairy.  Dairy products can make antibody levels rise.

More importantly, vitamin deficiencies occur after surgery.  Anesthesia can precipitate a B 12 deficiency because nitrous oxide used in anesthesia can irrevocably bind with the B12 making it useless.  Thiamine deficiency can be precipitated by surgery because of increased metabolic demands when ill.  

Deficiencies in these vitamins can cause constipation and "senior moments". 

Do talk to your doctor about checking for nutritional deficiencies as part of proper follow up care for Celiac patients.  Supplementing with essential vitamins and minerals can boost your absorption of these nutrients.  Most Celiacs are deficient in the B Complex vitamins, Vitamin D, and minerals like magnesium, iron, and zinc, all important in repairing and healing the body.  

Keep us posted on your progress!

[trents]

So, did you get the decimal point wrong in both places? Was that original tTG-IGA 18.9 instead of 189? So, did it go from 18.9  up to 22.6 or from 189 down to 22.6?

The endomycial (aka, EMA) is an older test and has generally been replaced by the tTG-IGA which is less expensive to perform and pretty much tests in the same way. It is more sensitive than the EMA so it is not uncommon for the tTG-IGA to be positive and the EMA to be negative, especially when the tTG-IGA is not a strong positive.

As mentioned by knitty kitty, dairy can cause elevated tTG-IGA and so can oats (even gluten free oats) in about 10% of celiacs. We call this cross reactivity. The proteins of these foods are similar in structure to gluten. Also, there are some medications like NSAIDs and a certain blood pressure med that can damage small bowel villi as well as certain other medical conditions.

https://www.verywellhealth.com/villous-atrophy-562583

[glucel]

3 hours ago, Scott Adams said:

I believe you meant that your tTg-IgA levels went up even though you've been on a gluten-free diet, is that correct. If so, are you sure you understand the gluten-free diet fully?

This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):

 

 

I'm very sorry for confusion. I replied to my original post and explained that I did not see the decimal point. In reality the number went down from 189 to 22.6 three months later. The gastro office called today and the assistant said the doc sees it as good progress. Said nothing about weight loss or constipation.

[RMJ]

You must be doing a great job with the gluten free diet. That’s a good decrease for three months!
I’m glad your doctor is looking into your symptoms further with an MRI. So often once celiac is diagnosed any other GI symptoms are attributed to it. I hope you get an answer soon.

[glucel]

3 hours ago, knitty kitty said:

Welcome to the forum, @glucel!

Are you still consuming dairy?  

About half of people with Celiac Disease also react to dairy.  Dairy products can make antibody levels rise.

More importantly, vitamin deficiencies occur after surgery.  Anesthesia can precipitate a B 12 deficiency because nitrous oxide used in anesthesia can irrevocably bind with the B12 making it useless.  Thiamine deficiency can be precipitated by surgery because of increased metabolic demands when ill.  

Deficiencies in these vitamins can cause constipation and "senior moments". 

Do talk to your doctor about checking for nutritional deficiencies as part of proper follow up care for Celiac patients.  Supplementing with essential vitamins and minerals can boost your absorption of these nutrients.  Most Celiacs are deficient in the B Complex vitamins, Vitamin D, and minerals like magnesium, iron, and zinc, all important in repairing and healing the body.  

Keep us posted on your progress!

Thanks Knitty. Last b12 test taken 6 mo following surgery was middle of the range. I recently switched to methyl forms of folate and 12. I do the other supplements that you mentioned. I stopped all dairy and eat one egg per day. I was drinking 8 oz of kefir daily but stopped that few weeks ago. I will try it again if weight gain continues and see what happens.

[knitty kitty]

Were you taking supplements in the weeks before having your B12 measured?   Taking supplements before testing for deficiencies can cause falsely high readings.  

Weight gain or weight loss can be caused by low thiamine, needed to process fats, carbohydrates and proteins into energy for the body.  

Low Thiamine and low magnesium can also cause constipation.

Interesting Reading:

Hiding in Plain Sight: Modern Thiamine Deficiency

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/

Thiamine deficiency disorders: a clinical perspective

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8451766/

[glucel]

3 hours ago, trents said:

So, did you get the decimal point wrong in both places? Was that original tTG-IGA 18.9 instead of 189? So, did it go from 18.9  up to 22.6 or from 189 down to 22.6?

The endomycial (aka, EMA) is an older test and has generally been replaced by the tTG-IGA which is less expensive to perform and pretty much tests in the same way. It is more sensitive than the EMA so it is not uncommon for the tTG-IGA to be positive and the EMA to be negative, especially when the tTG-IGA is not a strong positive.

As mentioned by knitty kitty, dairy can cause elevated tTG-IGA and so can oats (even gluten free oats) in about 10% of celiacs. We call this cross reactivity. The proteins of these foods are similar in structure to gluten. Also, there are some medications like NSAIDs and a certain blood pressure med that can damage small bowel villi as well as certain other medical conditions.

https://www.verywellhealth.com/villous-atrophy-562583

If there was a decimal in the original189 I probably would not have seen that either. I just got new bifocals distance and reading but still use my old readers for my desktop computer. Obviously need to do something about that - some day. So in short the reading has gone DOWN from 189 to 22.6. 

Very interesting point about nsaids. I have gone from multiple crazy drugs down to 81 mg baby aspirin for blood thinner and 10 mg of artorvastatin for cholesterol. I mentioned to cardio doc that maybe aspirin was creating havoc with stomach and he abruptly said it doesn't cause any trouble and that celiac is the problem. I really didn't care for his reaction but he is second cardio guy, moved on from first. so I really do not want to be looking for third right now. In any event, I need to be on a blood thinner and the prescription blood thinners have their own set of problems. I'm all ears if anybody has an idea on that. Thanks.

 

 

[trents]

Any NSAID has potential for creating peptic ulcers if used regularly. Some more than others. Cox 2 inhibitors are less prone to cause that issue but even they don't eliminate the possibility altogether.

Coumadin does not harm the gut if you need a blood thinner.

[glucel]

1 hour ago, RMJ said:

You must be doing a great job with the gluten free diet. That’s a good decrease for three months!
I’m glad your doctor is looking into your symptoms further with an MRI. So often once celiac is diagnosed any other GI symptoms are attributed to it. I hope you get an answer soon.

Thanks rmj. I should have taken the mri already but I do not take the tunnel well. I thought I would wait to see how the blood test goes. I am also feeling a little bit better about regaining 5 pounds over the last few weeks stalling out at 149 for last several days. The assistant to doc told me today that she would look into an open mri but if I continue to gain weight and other thing gets better then I see no reason to do mri, at least for now. If I could just cut out refined sugar- dream on.

[glucel]

8 minutes ago, trents said:

Any NSAID has potential for creating peptic ulcers if used regularly. Some more than others. Cox 2 inhibitors are less prone to cause that issue but even they don't eliminate the possibility altogether.

Coumadin does not harm the gut if you need a blood thinner.

I was on coumadin for a while after surgery and had a lot of trouble with vitamin k which pretty much curtailed how many veggies I could eat. The constant testing for vitamin k was expensive and a nuisance. I plan to ask doc if nsaid can be taken every other day instead of daily.

[trents]

I have been on Coumadin for years because I have a genetic blood clotting disorder known as Factor 5 Leiden. I think it's mainly green leafy veggies that you have to worry about. They are the ones high in vitamin K. And if your are consistent in your consumption of them it your INR should level out. I get my INR checked every 6 weeks. Certain medications can mess with INR too, like antibiotics so occasionally I have to go in more often or INR checks.

[glucel]

34 minutes ago, knitty kitty said:

Were you taking supplements in the weeks before having your B12 measured?   Taking supplements before testing for deficiencies can cause falsely high readings.  

Weight gain or weight loss can be caused by low thiamine, needed to process fats, carbohydrates and proteins into energy for the body.  

Low Thiamine and low magnesium can also cause constipation.

Interesting Reading:

Hiding in Plain Sight: Modern Thiamine Deficiency

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/

Thiamine deficiency disorders: a clinical perspective

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8451766/

I was taking the non biological of folate  and b12. Have since started methyl forms. Looking forward to some healing.

[glucel]

8 minutes ago, trents said:

I have been on Coumadin for years because I have a genetic blood clotting disorder known as Factor 5 Leiden. I think it's mainly green leafy veggies that you have to worry about. They are the ones high in vitamin K. And if your are consistent in your consumption of them it your INR should level out. I get my INR checked every 6 weeks. Certain medications can mess with INR too, like antibiotics so occasionally I have to go in more often or INR checks.

Yes I forgot it is the green leafy. I just don't take drugs well. It wasn't just the inr but was also getting nose bleeds. Right now I have to figure out what I am going to do with the mri as discussed with rmj on this page and see how my weight goes. Need to get some info together before my next cardio visit so I can deal with a doc who claims celiac and not aspirin is the problem. 

[glucel]

13 hours ago, knitty kitty said:

Were you taking supplements in the weeks before having your B12 measured?   Taking supplements before testing for deficiencies can cause falsely high readings.  

Weight gain or weight loss can be caused by low thiamine, needed to process fats, carbohydrates and proteins into energy for the body.  

Low Thiamine and low magnesium can also cause constipation.

Interesting Reading:

Hiding in Plain Sight: Modern Thiamine Deficiency

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/

Thiamine deficiency disorders: a clinical perspective

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8451766/

knitty, I am scheduled for physical exam near eom. Would like to have b 12 etc tested. Should I stop taking supplements so as not to get false readings? Is stopping supplements for 3 weeks or so causing harm?

[Scott Adams]

If your goal is to get a baseline reading without any outside supplementation in your system, then you could do this, however, I get my levels checked while I am actually supplementing to see where things are. You can have higher B12 levels, as this will nut hurt you, only if the levels are too low will this cause issues.

[Wheatwacked]

On 9/16/2024 at 4:55 PM, glucel said:

that maybe aspirin was creating havoc with stomach and he abruptly said it doesn't cause any trouble and that celiac is the problem.

Malabsorption is a potential complication of bariatric surgery.  Is one your docs monitering vitamin D and other vitamins and mineral? Malabsorption due to the surgery and now adding the malabsorption from Celiac Disease?  Nutrition advice?

One hears stories; "You've got Celiac Disease, don't eat gluten.  Have a nice day".

Gluten Free stops the ongoing assault, but you need to also work on the deficiencies.  Can't heal without giving your body the tools it needs. 

I like your new doctor, he is telling you what you need to hear, not what you want.  Maybe you'll even get to like him.

A lot of the mistrust of aspirin, I think was the marketing campaign of Tylanol.  "Nine out of ten hospitals choose..."

Try disolving your aspirin in bicarbonate, or cut an Alka Seltzer Original (aspirin with bicarbonate) down to your required dose.  It is disolved so spends no time burning on the stomach floor and the bicarb temporatily nutralizes the stomach HCl.

[glucel]

Very interesting, thanks. I have been taking vitamin d since surgery but am going to have all the important so called celiac supplements tested next annual physical coming up end of month. 

 Tylenol reminds me of story on how vegetable oil ind mass campaign against coconut oil decades ago.

[Wheatwacked]

Growing up I wondered why restaurants always put parsley on the plates when no one ate it. 

ten grams of parsley sprigs have Vitamin K (phylloquinone)164µg.

The RDA of vitamin K is 19+ years male: 120 mcg  female: 90 mcg.

Maybe your doctor would agree instead of the pills?

The USDA Food Data Centra is a good source of nutrition.

USDA Food Data Parsley, fresh

I'd be interested in your test results vis a vis the Celiac vitamins.