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at1992

tongue inflammation, reflux, GI bleeding, depression

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So I'll try to keep this short and sweet. 

I'm a 25yo male and have had GI issues for about 7 years. Through many years and many doctors visits, I've gotten potential diagnoses of IBS, post-infectious IBS (d/t a Giardia infection in 2014), small intestine bacterial overgrowth, GERD, and even a strong suspicion of inflammatory bowel disease (Crohn's/Ulcerative Colitis). I've had two colonoscopies (no biopsies taken) and one EGD (biopsies only taken of STOMACH which showed chronic gastritis, not small intestine). Pretty much all of my tests have come back "normal." 

I'll start by saying that back in 2014ish my blood results for Celiac were negative. My GI symptoms vary and fluctuate greatly... When I'm really struggling, I'll have chronic diarrhea, debilitating reflux, hours of burping after eating anything, epigastric and lower right quadrant abdominal pain, severe fatigue (nearly passing out), migraines, awful brain fog / depression, unilateral eye pain and photophobia, mouth ulcers, glossitis (tongue inflammation), and occasional bloody mucus in my stool if I'm extremely flared.  

So my GP recommended I try a gluten-free diet after my IBD panel came back as negative. I reluctantly gave it a shot. I was gluten-free for about 2 months - slowly but surely, my chronic diarrhea relented, fatigue lifted, and my reflux nearly disappeared (to the point of considering stopping my omeprazole). Since eating gluten-free is so difficult, I decided to try a 3-day gluten challenge to see if gluten truly was the culprit. I ate gluten products 2-3 times/day for 3 days. It made my reflux a bit worse and gave me some pain, but nothing severe. My tongue however started progressively burning/stinging that week. 

The BAD symptoms came about 2 weeks after my first gluten exposure... My acid reflux became MUCH MUCH worse, despite medication. I lost about 7 pounds over 3 weeks from not wanting to eat. I had much more abdominal pain. My tongue became very inflamed and sensitive to eating/drinking. I got mouth ulcers. I became very depressed, irritable, and brain-fogged out of NOWHERE. I was nauseous and having headaches. It was NOT fun. That's when I thought, "Ok, I am definitely more sensitive to gluten than I thought." That was about 6 weeks ago and my stomach is still feeling the effects of those 3 days.

So, my questions: Has anyone experienced a similar story? Has anyone had lower GI bleeding with celiac? For those who have Celiac, are your symptoms typically delayed like that (2-3 weeks)? I know NCGS is supposed to have much more immediate symptom-onset. Has anyone tested negative to blood work, but positive on small intestine biopsies? 

 

Edited by at1992

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It is unusual to have such a delay in symtpom onset following gluten ingestion, a hours to a couple days is much more typical. It sounds like whoever did your scopes what not thorough enough and you should try to get another endoscopy and colonoscopy with biopsies of at least your small and large intestines to difinitely check for Celiacs, IBD, etc. It is certainly possible to have negative blood tests and positive biopsies with Celiacs disease, particularly if you have an IgA deficiency (associated with Celiacs).  Bleeding is also somewhat unusual for Celiacs disease and is certainly more associated with IBD, but alone doesn't help terribly much with diagnosis. I would definitely recommend you see a new GI who is more well versed or specializes in Celiacs and or IBD to get those biopsies. In the meantime stick with a gluten free diet as best as possible. Good luck!

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8 hours ago, at1992 said:

Has anyone experienced a similar story? Has anyone had lower GI bleeding with celiac? For those who have Celiac, are your symptoms typically delayed like that (2-3 weeks)? I know NCGS is supposed to have much more immediate symptom-onset. Has anyone tested negative to blood work, but positive on small intestine biopsies? 

Hello and welcome :)

I don't have celiac. I do have several symptoms in common with you and I do have a problem with gluten, so NCGS for want of a better term. 

A celiac response to gluten involves the immune system so there certainly can be a delay between ingestion and the body producing the antibodies. That would correlate with your tongue aching progressively through the week. Some of the weirder symptoms of celiac occur because those antibodies that have identified gluten proteins as a problem then attack different parts of the body, maybe that's the more delayed reaction in your case. Last time I was glutened definitely I noticed some reaction in a few hours but it was a couple of days before I was certain. After effects can last for weeks or months even. 

8 hours ago, at1992 said:

I know NCGS is supposed to have much more immediate symptom-onset

Wheat allergy is the one with the instant response, it's IGE mediated and so you can have an immediate surge in histamines and in extreme cases anaphylaptic reaction. NCGS is less well understood, some dispute it's existince or question if gluten is the cause. The symptoms however are similar to celiac as far as I know and that includes response time. 

You've been through a miserable time but your still young and you need to decide whether you want to pursue a diagnosis or not. If you do, then it will require a gluten challenge of probably 6-12 weeks. See the links below for more details. 

If you don't I suggest you go strictly gluten free, keep a food diary and see if the improvements you noted before continue. I think you've probably found your answer.

Best of luck!

 

Further reading

https://www.celiac.com/gluten-free/announcement/3-frequently-asked-questions-about-celiac-disease/

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I have celiac and UC, before the UC diagnosis I was eating carbs when I could small amounts of fruit, rice, beans, low glycemic sugars like maple, agave, coconut. I was having constant bloody stools. After the UC dianosis and the inflammation they found I stopped eating carbs, grains and sugars moving to a ketogenic diet of nuts, seeds, leafy greens, avocado, julian bakery bread, egg whites, etc. The bloody stools and bloating stopped in the first week, seems glucose, sucrose, fructose, dairy, soy, and a few others are triggers for my UC flare ups that cause the bleeding.

As to your delayed reaction, I get nerve and brain issues that last for up 3-6 weeks after a exposure, numbness, loss of coordination, and brain fog.

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13 hours ago, wabillin said:

It is unusual to have such a delay in symtpom onset following gluten ingestion, a hours to a couple days is much more typical. It sounds like whoever did your scopes what not thorough enough and you should try to get another endoscopy and colonoscopy with biopsies of at least your small and large intestines to difinitely check for Celiacs, IBD, etc. It is certainly possible to have negative blood tests and positive biopsies with Celiacs disease, particularly if you have an IgA deficiency (associated with Celiacs).  Bleeding is also somewhat unusual for Celiacs disease and is certainly more associated with IBD, but alone doesn't help terribly much with diagnosis. I would definitely recommend you see a new GI who is more well versed or specializes in Celiacs and or IBD to get those biopsies. In the meantime stick with a gluten free diet as best as possible. Good luck!

 

Thanks for the help! And actually when I first saw my new GI doc he asked me quite a bit about gluten in my diet, but I think he was mostly concerned about IBD considering my fluctuations of blood in my stool. So, I think he would be eager to explore celiac if I went back to him and told him how I reacted to gluten. 

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5 hours ago, Jmg said:

Hello and welcome :)

I don't have celiac. I do have several symptoms in common with you and I do have a problem with gluten, so NCGS for want of a better term. 

A celiac response to gluten involves the immune system so there certainly can be a delay between ingestion and the body producing the antibodies. That would correlate with your tongue aching progressively through the week. Some of the weirder symptoms of celiac occur because those antibodies that have identified gluten proteins as a problem then attack different parts of the body, maybe that's the more delayed reaction in your case. Last time I was glutened definitely I noticed some reaction in a few hours but it was a couple of days before I was certain. After effects can last for weeks or months even. 

Wheat allergy is the one with the instant response, it's IGE mediated and so you can have an immediate surge in histamines and in extreme cases anaphylaptic reaction. NCGS is less well understood, some dispute it's existince or question if gluten is the cause. The symptoms however are similar to celiac as far as I know and that includes response time. 

You've been through a miserable time but your still young and you need to decide whether you want to pursue a diagnosis or not. If you do, then it will require a gluten challenge of probably 6-12 weeks. See the links below for more details. 

If you don't I suggest you go strictly gluten free, keep a food diary and see if the improvements you noted before continue. I think you've probably found your answer.

Best of luck!

 

Further reading

https://www.celiac.com/gluten-free/announcement/3-frequently-asked-questions-about-celiac-disease/

 

Thanks so much for the response and the added link! And yes, I've done quite a bit of reading on the pathophys behind celiac and the timing of things. I was doing some reading that sometimes the delay of symptoms can be years. So crazy how our immune system works! I just thought it was very interesting how the brunt of my symptoms came 2 weeks later as opposed to immediate. I know every body is different though. We will see what my doctor says whenever I go back to him, though! You're right - I am young, and I do need to decide if I want to continue on in finding a diagnosis. It's hard to go to the doctor over and over again and always be told everything looks normal. 

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1 hour ago, at1992 said:

Thanks so much for the response and the added link! And yes, I've done quite a bit of reading on the pathophys behind celiac and the timing of things. I was doing some reading that sometimes the delay of symptoms can be years. So crazy how our immune system works! I just thought it was very interesting how the brunt of my symptoms came 2 weeks later as opposed to immediate. I know every body is different though. We will see what my doctor says whenever I go back to him, though! You're right - I am young, and I do need to decide if I want to continue on in finding a diagnosis. It's hard to go to the doctor over and over again and always be told everything looks normal. 

There's no right or wrong answer, there are pros for getting the diagnosis, certainty, ability to warn relatives, monitor children, ensure you get gluten free food if your hospitalised etc. On the flip side, there's no treatment other than gluten-free diet and some who have already seen benefits of gluten-free diet for them cant face the challenge and the reappearance of symptoms.  

I went through the challenge and endoscopy convinced I'd be told I was celiac and its the first and probably only time I've been somewhat disappointed to learn I don't have a serious disease! Because Celiac explained a host of my issues and I'd had the reaction to the gluten challenge by then. 

Even though I tested negative and the challenge was unpleasant I don't regret going through it. The endo revealed a hiatus hernia and gastritis. The challenge revealed my reaction to gluten. My consultant told me to avoid it for life. That was sufficient for me to stop any further searching. 

One thing I've read on here which makes sense. IBS or IBD isn't much of a diagnosis. There are many, many people here who were given that and later found it was celiac. My dad has been diagnosed with it and I suspect he's got a similar issue to me. Not that he'd countenance removing gluten.

If you're willing to go through the challenge I'd hope your doctor would support you with at least a celiac panel. If you can find this one:

15 hours ago, at1992 said:

I'll start by saying that back in 2014ish my blood results for Celiac w

you may be able to see if you had the full panel or not. Some only test positive on one of the arrays. Maybe one which wasnt ran in your case?

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