Aftermath of endoscopy and next steps

[Elkwestern380]

Hi All, I am new to this site and trying to get to the bottom of my digestive woes that have gone on for decades (now 41). I need some advice as to what to do next after this series of events:

In 2013, I did an elimination diet after having IBS symptoms since childhood. I figured out that I am completely intolerant to dairy (beyond lactose intolerant, which I knew I was) and basically adopted a Paleo style diet due to sensitivities to grains and legumes. I was going along fine with some periods straying from the diet now and then over holidays or travel, and maybe had 1-2 bad days here and there per month, but nothing to complain about. In 2018, my mom and brother were diagnosed with celiac and we all found out that we carry the gene (my mom carries DQ2.5 and DQ8, I got DQ8 and my brother got DQ2.5). I didn't think too much about it because I was busy having two children between 2018 and 2020 and then the pandemic hit. But over the last year, things have not been right. I have an increasing number of FODMAP sensitivities and at times get mild rashes on my elbows. Last summer I went back to a strict gluten-free, low-grain (maybe occasional rice or gluten-free pasta), no legume diet, but found again, that my symptoms were numerous - lots of bloating, painful gas, and constipation, but no rashes. I also was diagnosed with Adult FPIES to shellfish after having several delayed but violent reactions to eating shrimp (maybe microbiome related?). In November I decided to see a GI.

Based on my family history and symptoms, the GI said I needed an endoscopy and so I did a gluten challenge for 6 weeks beforehand (simply due to the timing of scheduling). During this time, I at A LOT of gluten. I mean A LOT of gluten. I had a gluten component to every meal and at least one snack with gluten each day. The challenge wasn't awful for me compared to what I've read can happen. It started with bloating (but that's normal for me anyway) but after four days, I developed a continual sore taste in my mouth, burping, nausea with an empty stomach, and on/off heartburn. None of these symptoms are normal for me (in fact, I never get heartburn, only once during my first pregnancy when I thought I was having a cardiac event and my doctor told me to take some tums, LOL). The mild rash on my elbows appeared after about 8 days and came on and off for the rest of the six weeks, never progressing to worse than a few tiny, itchy bumps on each elbows at a time. 

I went for the endoscopy and at the end of last week I got a note from the doctor on the patient portal saying that they found gastritis in my stomach, which explains all of the upper-GI symptoms I was having. But she also said that this was not causing my lower GI symptoms and to call if I had questions. It was a holiday on Friday, so I'm going to call on Monday to get more info, but they didn't mention the small intestinal biopsies (I assume they were normal??). I just need some advice on how to approach this moving forward.

My questions are:

1. Why didn't they do a blood test and should I get one? I could keep eating gluten for a few more weeks and get one. If they say it's not necessary since my endoscopy didn't show damage, should I get one anyway (order my own test)? 

2. Could this be non-celiac gluten sensitivity? Can NCGS cause gastritis and rashes?

3. If I am NCGS, will eliminating gluten strictly (no cheats, eliminate cross contamination) help get my digestive tract back on to working order? Right now the list of foods that I tolerate is quite low as anything with soluble fiber gives me issues including gluten-free grains like brown rice and quinoa and numerous vegetables. 

Thoughts?

I appreciate the help. 

[cristiana]

Hello Elkwestern

Welcome to the forum.

Do you know if the person who conducted the endoscopy actually took biopsies of your gut?  The reason I ask is that I got the results of my first endoscopy in installments - if your experience mirrors mine, it could be they haven't analyzed the biopsies yet.  In my own case I had very strong TTG readings which led to the endoscopy.  After the endoscopy, I got an initial letter saying everything looked normal followed by the biopsy results a few days later, in a separate letter, from memory, which said I had Marsh Scale 3 damage to my villi.  I recalled being a bit confused at the time, until the second letter turned up.

It is possible to have gastritis and celiac disease of course, so perhaps they are just reporting back on their initial findings?  With more to follow?

But to answer your question 1), if you can get a blood test done easily, I think that would be a plan.  The thing is, my gastroenterologist likes to stress the importance of taking plenty of samples for biopsy so that nothing is missed - I take from that that it is possible, perhaps, to miss damage. If you test positive, you would have grounds to request another scope perhaps?

I will let others answer your other questions as I don't know much about celiac rashes but as a fellow gastritis sufferer my sympathies go out to you.   It can be a very uncomfortable condition - in my own case, it is caused by NSAIDs, some antibiotics and other meds, glutening and also eating too much rich food.  

Cristiana

Edited January 1, 2022 by cristiana

[trents]

38 minutes ago, Elkwestern380 said:

My questions are:

1. Why didn't they do a blood test and should I get one? I could keep eating gluten for a few more weeks and get one. If they say it's not necessary since my endoscopy didn't show damage, should I get one anyway (order my own test)?

Yes, you should get one. You can also order an at home celiac disease test for about $100 through Imaware. Can't say why your doc did not order one to begin with except that there is an abysmal lack of knowledge concerning celiac disease in the medical community as a whole. My guess would be that celiac disease just wasn't on your doctors' radar. You should enquire about whether or not a celiac biopsy was done and sent to a lab for analysis.

2. Could this be non-celiac gluten sensitivity? Can NCGS cause gastritis and rashes?

Yes, it could. I believe NCGS can contribute to gastritis but not sure about rashes. Is the rash DH do you think?

3. If I am NCGS, will eliminating gluten strictly (no cheats, eliminate cross contamination) help get my digestive tract back on to working order? Right now the list of foods that I tolerate is quite low as anything with soluble fiber gives me issues including gluten-free grains like brown rice and quinoa and numerous vegetables. 

Seems like you said you have already tried a gluten free diet and symptoms still persisted. Are you still eating dairy and oats? I wonder if you have developed intolerance to some other non-gluten foods. This is a phenomenon that is common with celiacs as the immune system is already dysfunctional and begins to peg various things as invaders over time. Have you heard of "leaky gut syndrome"?

I wonder if wouldn't benefit from a course of prednisone to quiet your immune system and get it under control? I'm not a physician but that is just a thought that occurred to me. I have been on prednisone a couple of times for sinus issues or this or that and was amazed at how much better I felt overall.

Thoughts?

I appreciate the help. 

 

Edited January 1, 2022 by trents

[Elkwestern380]

5 minutes ago, cristiana said:

Hello Elkwestern

Welcome to the forum.

Do you know if the person who conducted the endoscopy actually took biopsies of your gut?  The reason I ask is that I got the results of my first endoscopy in installments - if your experience mirrors mine, it could be they haven't analyzed the biopsies yet.  In my own case I had very strong TTG readings which led to the endoscopy.  After the endoscopy, I got an initial letter saying everything looked normal followed by the biopsy results a few days later, in a separate letter, from memory, which said I had Marsh Scale 3 damage to my villi.  I recalled being a bit confused at the time, until the second letter turned up.

It is possible to have gastritis and celiac disease of course, so perhaps they are just reporting back on their initial findings?  With more to follow?

But to answer your question 1), if you can get a blood test done easily, I think that would be a plan.  The thing is, my gastroenterologist likes to stress the importance of taking plenty of samples for biopsy so that nothing is missed - I take from that that it is possible, perhaps, to miss damage. If you test positive, you would have grounds to request another scope perhaps?

I will let others answer your other questions as I don't know much about celiac rashes but as a fellow gastritis sufferer my sympathies go out to you.   It can be a very uncomfortable condition - in my own case, it is caused by NSAIDs, some antibiotics and other meds, glutening and also eating too much rich food.  

Cristiana

Thanks for your response, Cristiana. I had that exact thought that maybe they didn't release all the results of the biopsies yet and this was one of the questions I have for when I call on Monday. The patient portal the GI uses just said, "test result" and there were two written lines from the doctor but no images or anything scanned into the report. Immediately after the endoscopy, they handed me a summary sheet that said that everything looked normal (esophagus, stomach, and duodenum), but that they had taken biopsies of the stomach and small intestines. As I said, the doctor only commented on the stomach biopsy and nothing else. I know the gastritis was caused by the gluten challenge as I don't take any medications or NSAIDs (maybe a few times a year) and I haven't drank alcohol in almost five years (I am still breastfeeding). And as I said, I didn't have those symptoms prior so that would be a weird coincidence. When my brother was diagnosed, he was having an endoscopy due to chronic heartburn and they wanted to check his esophagus for damage. They found celiac instead! He had no other symptoms.

My question though is that can they "miss" the damage? There seems to be differing opinions on this. I realize that the small intestines are long, but my understanding is that celiac damage predominately occurs in duodenum which is only a few inches long. My gluten challenge was four weeks longer than the suggested length of time for endoscopy and I must have been consuming 10g of gluten a day, at least. I didn't want it to be inconclusive! Sigh!

[cristiana]

I think it's really interesting that your gastritis symptoms occurred after the gluten challenge.  Glutening causes the most awful burning sensation in my stomach that can last for some time.  I don't drink alcohol as it has always tasted like medicine to me but the one time I did when I had gastritis the pain was unbearable.  And like your brother, I also get heartburn and reflux, so perhaps we are related to each other!

I find I can hasten recovery from gastritis caused by glutening by avoiding fatty, spice and acidic foods and by following a gastritis/heartburn diet.  If needed, also take a PPIs for a few days.. Not everyone would agree with this course of action, but it works best for me.  I taper off them gradually after a few days taking them, to avoid rebound.

I'm relying on my notoriously unreliable memory here, so treat this with caution, but I am sure I have read on this site that damage can be missed if insufficient samples are taken - and this seems to support what my gastroenterologist implies.   He takes six (again from memory) from different parts of the duodenum each time I've had an endoscopy, just to be sure.

I found it interesting, too, you mention that you find it difficult to tolerate soluable fibre.  When I was first diagnosed that was my issue too.  Peas, lentils, pure oats... very painful.

 

 

Edited January 1, 2022 by cristiana

[Elkwestern380]

4 minutes ago, trents said:

 

Thanks, trents. They were fully aware this was a celiac screening! They did biopsies, but I don't know how many. And yes, I definitely think I have leaky gut or some sort of microbiome dysbiosis. When I did the elimination diet in 2013, I figured out milk protein was a problem and now if dairy sneaks into my food (even if I eat one hershey kiss for instance), I wake up the next morning congested and then about a day or two later, I get an intense sinus headache (the kind that creates pressure when you bend over). I used to get "seasonal allergies," but once I eliminated diary, they went away. I used to be able to tolerate aged sheep's milk cheese (i.e. romano), but lately that's been giving me a reaction. The reason I think I have some sort of dysbiosis is that I just can't tolerate soluble fiber and I can feel my gut going nuts if I eat it and the FPIES thing is just weird and seems to be related to gut bacteria. I feel though that both of these things (leaky gut and dysbiosis) must have an underlying reason. I am wondering if I were to eliminate gluten, extremely strictly for a few years (which I have never done) would help so I can again eat a wider range of foods with out waking up in digestive pain!

[trents]

1 minute ago, cristiana said:

 

 

Yes, damage to the villi can be patchy and missed by inexperienced doctors doing the biopsies. Numerous samples need to be taken from various areas of the duodenem.

[Lyns5201]

2 hours ago, cristiana said:

Hello Elkwestern

Welcome to the forum.

Do you know if the person who conducted the endoscopy actually took biopsies of your gut?  The reason I ask is that I got the results of my first endoscopy in installments - if your experience mirrors mine, it could be they haven't analyzed the biopsies yet.  In my own case I had very strong TTG readings which led to the endoscopy.  After the endoscopy, I got an initial letter saying everything looked normal followed by the biopsy results a few days later, in a separate letter, from memory, which said I had Marsh Scale 3 damage to my villi.  I recalled being a bit confused at the time, until the second letter turned up.

It is possible to have gastritis and celiac disease of course, so perhaps they are just reporting back on their initial findings?  With more to follow?

But to answer your question 1), if you can get a blood test done easily, I think that would be a plan.  The thing is, my gastroenterologist likes to stress the importance of taking plenty of samples for biopsy so that nothing is missed - I take from that that it is possible, perhaps, to miss damage. If you test positive, you would have grounds to request another scope perhaps?

I will let others answer your other questions as I don't know much about celiac rashes but as a fellow gastritis sufferer my sympathies go out to you.   It can be a very uncomfortable condition - in my own case, it is caused by NSAIDs, some antibiotics and other meds, glutening and also eating too much rich food.  

Cristiana

What antibiotics seem to really cause the stomach burning for you? so far I’ve had issues with keflex,amoxicillin and bactrim 

[cristiana]

18 minutes ago, Lyns5201 said:

What antibiotics seem to really cause the stomach burning for you? so far I’ve had issues with keflex,amoxicillin and bactrim 

The really memorable one was Trimethoprin which I took for a UTI.  My stomach burned so badly, and I got heartburn.  It was so bad I reported it through the Yellow Card system in the UK. 

The only way I could finish the course was to take Nexium, under medical supervision, and even then I still had symptoms, just not so bad.  I think I was unfortunate as my friends don't seem to have issues with this medication at all, just me.  At the time my TTG numbers were still around the 20s-40s (can't recall exactly) so it's possible that as I still wasn't completely healed I had these issues.  I might not have otherwise.

There was another antibiotic that hurt but not so badly, only towards the end of the course, but I can't recall the name.  Trimethoprin did clear the UTI though, so not all bad!

Edited January 1, 2022 by cristiana

[RMJ]

I would definitely want to get a copy of the pathologists’s report on the biopsies, not just the GI doctor’s summary of the report.

[GF-Cate]

On 1/1/2022 at 1:13 PM, Elkwestern380 said:

2. Could this be non-celiac gluten sensitivity? Can NCGS cause gastritis and rashes?

3. If I am NCGS, will eliminating gluten strictly (no cheats, eliminate cross contamination) help get my digestive tract back on to working order? Right now the list of foods that I tolerate is quite low as anything with soluble fiber gives me issues including gluten-free grains like brown rice and quinoa and numerous vegetables. 

It could be NCGS, but it would be best to get the full celiac panel of blood tests while you are still consuming gluten before ruling celiac out. Since you have a celiac gene, even if it is not celiac now it could still develop at any point in the future (for your kids too if they got the gene(s) - so good to get them tested too - gene test now, blood tests after age 3).

https://www.beyondceliac.org/living-with-celiac-disease/info-for-parents/testing/

If the rash you have is DH (dermatitis herpetiformis) then you definitely have celiac. If they think that's what the rash is, it is confirmed with skin biopsy.

https://www.beyondceliac.org/celiac-disease/dermatitis-herpetiformis/testing/

 

On 1/1/2022 at 1:13 PM, Elkwestern380 said:

3. If I am NCGS, will eliminating gluten strictly (no cheats, eliminate cross contamination) help get my digestive tract back on to working order? Right now the list of foods that I tolerate is quite low as anything with soluble fiber gives me issues including gluten-free grains like brown rice and quinoa and numerous vegetables. 

 

Your gut should heal with time and attention (and possibly additional food eliminations - either temporary or permanent). If your home is not gluten-free, you may find you need it to be to truly eliminate cross-contact (others do fine with careful kitchen management of gluten). 

With both celiac and NCGS, some percentage of people need to avoid dining out/food prepared by others. 

Personally, as my gut healed and I eliminated all sources of cross-contact and went to certified gluten-free products, I was able to add back many foods (including some gluten-free grains, which I was off). Sadly, I had to let go of dairy again recently and that helped my digestion a lot (I was off it when I first went gluten-free as I could not tolerate, then seemed to be able to tolerate after many months without, but another trial without makes me realize I am better off without it ...RIP delicious cheese

 

[Elkwestern380]

1 hour ago, GF_Cate said:

It could be NCGS, but it would be best to get the full celiac panel of blood tests while you are still consuming gluten before ruling celiac out. Since you have a celiac gene, even if it is not celiac now it could still develop at any point in the future (for your kids too if they got the gene(s) - so good to get them tested too - gene test now, blood tests after age 3).

https://www.beyondceliac.org/living-with-celiac-disease/info-for-parents/testing/

If the rash you have is DH (dermatitis herpetiformis) then you definitely have celiac. If they think that's what the rash is, it is confirmed with skin biopsy.

https://www.beyondceliac.org/celiac-disease/dermatitis-herpetiformis/testing/

 

Your gut should heal with time and attention (and possibly additional food eliminations - either temporary or permanent). If your home is not gluten-free, you may find you need it to be to truly eliminate cross-contact (others do fine with careful kitchen management of gluten). 

With both celiac and NCGS, some percentage of people need to avoid dining out/food prepared by others. 

Personally, as my gut healed and I eliminated all sources of cross-contact and went to certified gluten-free products, I was able to add back many foods (including some gluten-free grains, which I was off). Sadly, I had to let go of dairy again recently and that helped my digestion a lot (I was off it when I first went gluten-free as I could not tolerate, then seemed to be able to tolerate after many months without, but another trial without makes me realize I am better off without it ...RIP delicious cheese

 

Thanks! This is helpful and it is comforting to hear that healing resulted in being able to eat some of the foods again. It's sad about the dairy though. I am genetically lactose intolerant but would love to eat some aged cheeses again if I could. But honestly, I think a diary-free, gluten-free diet sounds amazing right now! I'd go super, super strict gluten-free to regain the ability to eat that diet and not have to avoid all the other foods too.

I don't really know about the rash. The bumps are very, very itchy (the urge to itch starts just before the spot appears), but they are very tiny and don't last all that long. Once I scratch them, they scab over and then disappear in a few days. I get the rash in the DH locations; during the last six weeks, I got them mostly on my outer elbows and just a few individual bumps on my fingers. I wasn't sure if this was just a systemic reaction to eating so much gluten or a drastic change in my diet. From what I read, DH seems to be very painful and lasts for weeks, which was not the case for me, at least, but I've only been eating gluten regularly for relatively short period of time.