Does the Endoscopy Matter?

[TXMama78]

Hi Everyone,

I have had Hashimoto's (autoimmune hypothyroidism) for over a decade. Back in 2013, I was having digestive trouble, and I had celiac blood work, and only the Gliadin Deamidated Antibody, IGA came back as a weak positive. I had an endoscopy, which didn't find any evidence of celiac disease. At the time, I asked the gastroenterologist if I should go gluten free anyway, and he said "We just don't know. You might develop celiac down the road, but you also might not." My husband was not at all supportive of my giving up gluten (from his perspective, we paid for the endoscopy so we would know whether we had to or not, and since the endoscopy was clean, we didn't have to.

Fast forward to 2017, and again I'm having digestive trouble. This time, no one tests me for celiac, but I get tested for fructose malabsorption, lactose intolerance, and SIBO (all of which were negative). I was told to go on a low FODMAP diet, and I discovered that GOS, mannitol, sorbitol, and fructans were problems. Since fructans are found in wheat, I stopped eating wheat as well as foods containing those other FODMAPs, and I felt better for a long time. 

Now, about 6 weeks ago, my digestion tanked despite continuing to eat what had been working for 4 years. I went to my primary care doctor who checked my thyroid, some stool samples for bacteria and parasites, and a celiac panel. My Tissue Transglutamina SE AG, IGA came back positive (34 with a reference rage of >= 15). Immunoglobulin A was negative, and Endomysial Antibody SCR (IGA) w/refl to titer was negative. I have been referred to a gastroenterologist, and I'm going to request an endoscopy, making sure he takes at least 6 samples, including samples from the duodenal bulb.

However, and here, finally, is my question, does it really matter if the results of the endoscopy are negative? If my body is producing antibodies to gluten, there's a problem, right? It seems like even if the endoscopy is clean and I don't get a formal diagnosis of celiac, I should still do what it takes to get the tTG as low as possible, right? My one sort of hesitation there is that the Celiac Disease Foundation website says this about the tTG-IGA test, "There is also a slight risk of a false positive test result, especially for people with associated autoimmune disorders like type 1 diabetes, autoimmune liver disease, Hashimoto’s thyroiditis, psoriatic or rheumatoid arthritis, and heart failure, who do not have celiac disease." If the tTG is truly a false positive, does that mean I don't need to worry about gluten, or does it just mean that I don't have celiac but gluten is still a very bad idea for me?

I would value your opinions and any recommendations for what to ask the gastroenterologist when I see him.

Thanks!

[trents]

More than likely you have celiac disease with the high tTG-IGA score and more than likely your biopsy will be positive. The original biopsy was negative years ago, probably because you were in the early stages of celiac disease or possibly the damage was patchy and enough samples were not taken. The other possibility is that you have NCGS (Non Celiac Gluten Sensitivity). But with a strongly positive tTG-IGA it is probably celiac disease.

Realize also that you are not only to avoid wheat but barley and rye as well. Many processed food products, like breakfast cereal contain malt or malt flavoring which is usually made from barley but can also be made from wheat.

Food and drug companies can and do change their formulations such that what has been gluten free is no longer. Periodically you should review your cupboard stock to see if you are now getting gluten. And remember, it's not about cutting down on gluten but eliminating it entirely. With the positive tTG-IGA it would seem you are getting gluten from somewhere.

[TXMama78]

4 hours ago, trents said:

More than likely you have celiac disease with the high tTG-IGA score and more than likely your biopsy will be positive. The original biopsy was negative years ago, probably because you were in the early stages of celiac disease or possibly the damage was patchy and enough samples were not taken. The other possibility is that you have NCGS (Non Celiac Gluten Sensitivity). But with a strongly positive tTG-IGA it is probably celiac disease.

Realize also that you are not only to avoid wheat but barley and rye as well. Many processed food products, like breakfast cereal contain malt or malt flavoring which is usually made from barley but can also be made from wheat.

Food and drug companies can and do change their formulations such that what has been gluten free is no longer. Periodically you should review your cupboard stock to see if you are now getting gluten. And remember, it's not about cutting down on gluten but eliminating it entirely. With the positive tTG-IGA it would seem you are getting gluten from somewhere.

Thank you for your reply. Until now, I would have said I was wheat free (because of fructans) but not gluten free (my niece has celiac disease, and I've watched my sister struggle to get her numbers down), and I'm pretty intimidated by the prospect of going fully gluten free. I have 2 kids, one of whom is incredibly picky, so it's going to be a bumpy start, I think. Thankfully, my doctor also referred me to a nutritionist, so between her and what I'm reading online, I'm hopeful I'll get it figured out pretty quickly.

[trents]

It can be very challenging to eat gluten free when others in the house are not. But, I can't emphasize enough how important it is for your health for you to find a way to truly eat gluten free. If you want to be present for your kids and not sickly then you will find a way to do this. The inflammation caused by celiac disease damages the lining of the small intestine which is the part of the digestive track where our nutrients are absorbed. Every time you consume gluten you will rekindle that inflammation. In addition, the celiac disease may very well be what is behind your other food issues that have driven you to the FODMAP diet.

[TXMama78]

15 hours ago, trents said:

It can be very challenging to eat gluten free when others in the house are not. But, I can't emphasize enough how important it is for your health for you to find a way to truly eat gluten free. If you want to be present for your kids and not sickly then you will find a way to do this. The inflammation caused by celiac disease damages the lining of the small intestine which is the part of the digestive track where our nutrients are absorbed. Every time you consume gluten you will rekindle that inflammation. In addition, the celiac disease may very well be what is behind your other food issues that have driven you to the FODMAP diet.

I am going to be very curious to see if I can eat some of the FODMAPs that have been off limits once I have healed from my gluten exposure. That would be a wonderful silver lining. Thanks for the encouragement and information. I appreciate it.

[trents]

This might be helpful: 

Check meds and supplements as well. Wheat starch is often used as a filler. Avoid restaurants like the plague. Even when you order food that would not naturally contain gluten you have no control over howe kitchen staff handles the food with regard to cross contamination. Are those gluten free spaghetti noodles being boiled in the same pot with wheat noodles? Are those fried eggs being cooked on the same griddle as French toast. Are those French fries being cooked in the same vat as breaded chicken strips? You get the idea. Educate yourself as to where and how gluten can be hidden in the food supply. Would you expect wheat to be found in canned soup like tomato soup? It almost always is. Rice and corn based breakfast cereals often contain "malt flavoring," a barley or wheat based grain derivative. Read the label for soy sauce. It usually contains wheat. Some chocolate syrups do. Yesterday I discovered that the Beecher's Flagship cheddar cheese I was eating is not gluten free because the aging enzyme culture they use is grown on a wheat substrate. Quaker oatmeal will have some wheat in it because of cross contamination ("CC") in the growing, transport, storage and processing phases that share wheat/barely/rye. Eating truly gluten free requires a lot of research and diligence. Over time you develop a sixth sense of when something may contain gluten and so calls for caution and research. 

[Jan Meindfak]

On 11/22/2021 at 4:20 PM, TXMama78 said:

Hi Everyone,

I have had Hashimoto's (autoimmune hypothyroidism) for over a decade. Back in 2013, I was having digestive trouble, and I had celiac blood work, and only the Gliadin Deamidated Antibody, IGA came back as a weak positive. I had an endoscopy, which didn't find any evidence of celiac disease. At the time, I asked the gastroenterologist if I should go gluten free anyway, and he said "We just don't know. You might develop celiac down the road, but you also might not." My husband was not at all supportive of my giving up gluten (from his perspective, we paid for the endoscopy so we would know whether we had to or not, and since the endoscopy was clean, we didn't have to.

Fast forward to 2017, and again I'm having digestive trouble. This time, no one tests me for celiac, but I get tested for fructose malabsorption, lactose intolerance, and SIBO (all of which were negative). I was told to go on a low FODMAP diet, and I discovered that GOS, mannitol, sorbitol, and fructans were problems. Since fructans are found in wheat, I stopped eating wheat as well as foods containing those other FODMAPs, and I felt better for a long time. 

Now, about 6 weeks ago, my digestion tanked despite continuing to eat what had been working for 4 years. I went to my primary care doctor who checked my thyroid, some stool samples for bacteria and parasites, and a celiac panel. My Tissue Transglutamina SE AG, IGA came back positive (34 with a reference rage of >= 15). Immunoglobulin A was negative, and Endomysial Antibody SCR (IGA) w/refl to titer was negative. I have been referred to a gastroenterologist, and I'm going to request an endoscopy, making sure he takes at least 6 samples, including samples from the duodenal bulb.

However, and here, finally, is my question, does it really matter if the results of the endoscopy are negative? If my body is producing antibodies to gluten, there's a problem, right? It seems like even if the endoscopy is clean and I don't get a formal diagnosis of celiac, I should still do what it takes to get the tTG as low as possible, right? My one sort of hesitation there is that the Celiac Disease Foundation website says this about the tTG-IGA test, "There is also a slight risk of a false positive test result, especially for people with associated autoimmune disorders like type 1 diabetes, autoimmune liver disease, Hashimoto’s thyroiditis, psoriatic or rheumatoid arthritis, and heart failure, who do not have celiac disease." If the tTG is truly a false positive, does that mean I don't need to worry about gluten, or does it just mean that I don't have celiac but gluten is still a very bad idea for me?

I would value your opinions and any recommendations for what to ask the gastroenterologist when I see him.

Thanks!

I think it's always better to have the endoscopy. It doesn't matter that much if it's negative with the clearly positive blood work, but if it's positive it's good to know the extent of the damage. It's also helpful at the doc's office - they'll stop asking you to finally do it. 

I remember when my blood work came back positive, and my then-GI doc said: "80% chances you've got celiac disease, now we have to perform the endoscopy to be sure". It was positive and it would turn out to be very helpful a year or so later when I had the second, control scope - we could compare the two results. 

 

 

[TXMama78]

2 hours ago, Jan Meindfak said:

I think it's always better to have the endoscopy. It doesn't matter that much if it's negative with the clearly positive blood work, but if it's positive it's good to know the extent of the damage. It's also helpful at the doc's office - they'll stop asking you to finally do it. 

I remember when my blood work came back positive, and my then-GI doc said: "80% chances you've got celiac disease, now we have to perform the endoscopy to be sure". It was positive and it would turn out to be very helpful a year or so later when I had the second, control scope - we could compare the two results. 

 

 

Reading your response made it clear to me how certain I am (with no rational reason) that my endoscopy will be negative. Your argument makes a lot of sense to me - that it's helpful to have the baseline to compare to in the future. I think the piece of the equation that I've been unsure of, because of my experience back in 2013, is that a negative endoscopy doesn't matter with clearly positive blood work. It sounds like both you and trents are very clear that regardless of the results of the endoscopy, it makes sense for me to really truly start eating gluten free after the endoscopy has been performed. That's very helpful. Thanks for your response!

[Jan Meindfak]

7 minutes ago, TXMama78 said:

Reading your response made it clear to me how certain I am (with no rational reason) that my endoscopy will be negative. Your argument makes a lot of sense to me - that it's helpful to have the baseline to compare to in the future. I think the piece of the equation that I've been unsure of, because of my experience back in 2013, is that a negative endoscopy doesn't matter with clearly positive blood work. It sounds like both you and trents are very clear that regardless of the results of the endoscopy, it makes sense for me to really truly start eating gluten free after the endoscopy has been performed. That's very helpful. Thanks for your response!

I was absolutely certain that I didn't have celiac disease - goes to show you never can tell! And to be honest, due to my skeptical nature, I wouldn't have believed it if I hadn't done the endoscopy. 

Anyway, good luck and keep us in the loop.  

Cheers