Convinced I have celiac but doctors disagree

[Steeb122]

I was having severe digestive problems that randomly appeared about a year and a half ago, along with neurological and other physical issues/pain, and extreme fatigue and muscle weakness. It seemed that every time I ate I had to run to the bathroom and nothing I ate seemed to digest. I lost 12 pounds in one month which is drastic for me, being only 5’. Just a bunch of stuff happened. So I payed attention to what I was eating and what would cause these issues. Decided I likely had a dairy issue and a wheat issue so I tried (not hard at all) to eat less of those and the symptoms didn’t go away. Got a blood allergy test, turns out I have problems with wheat, dairy, soy, peanuts, tree nuts, seeds, and shellfish. That day I cut all of those out of my diet. Drastically felt better immediately and whenever I would cave and cheat, wheat/gluten/whatever would absolutely destroy me. Either constipation or diarrhea, extreme abdominal pain, nausea, anxiety, even delusions, seriously feeling as though I was going to die. And these would persist for even up to a week after the one-time consumption of gluten. So I stopped entirely, and I went back to feeling pretty good but I found that I was still having abdominal pain and issues. Mentioned it to my doctor and said I thought it was just my body detoxing from the food allergies, and he told me that I shouldn’t have any prolonged systems as any no-no food I cheat with or accidentally consume will be out of my body in 24 hours. So that’s when I started wondering about celiac because my boyfriend has it and any time I complain he says it sounds exactly like what he experienced, and it would explain why I feel a lot better without gluten but still have issues. The allergy blood test was negative for celiac, but so was my boyfriend’s (his was really bad when he got his diagnosis, had been hospitalized for weeks before they finally figured it out, he was even given a feeding tube and having gluten pumped into him and they accused him of being anorexic because he continued to lose weight in the hospital.....shows how much these doctors know what they’re doing) and apparently that’s common (the negative blood test). So I saw a gastroenterologist and requested an endoscopy. Did a gluten challenge for about 4 weeks which was absolute hell, got the biopsy, they found nothing. Not only that - they said my stomach looks completely normal.

Regardless, I’m going back to my allergen free diet. But I’m really frustrated. I have these issues still and no diagnosis but within all the research I do, all signs point toward celiac. Think I’m just gonna keep going with the diet and see if the pain and issues work themselves out and from there likely diagnose myself.

anybody in a similar situation or have any advice? 

[kareng]

8 minutes ago, Steeb122 said:

I was having severe digestive problems that randomly appeared about a year and a half ago, along with neurological and other physical issues/pain, and extreme fatigue and muscle weakness. It seemed that every time I ate I had to run to the bathroom and nothing I ate seemed to digest. I lost 12 pounds in one month which is drastic for me, being only 5’. Just a bunch of stuff happened. So I payed attention to what I was eating and what would cause these issues. Decided I likely had a dairy issue and a wheat issue so I tried (not hard at all) to eat less of those and the symptoms didn’t go away. Got a blood allergy test, turns out I have problems with wheat, dairy, soy, peanuts, tree nuts, seeds, and shellfish. That day I cut all of those out of my diet. Drastically felt better immediately and whenever I would cave and cheat, wheat/gluten/whatever would absolutely destroy me. Either constipation or diarrhea, extreme abdominal pain, nausea, anxiety, even delusions, seriously feeling as though I was going to die. And these would persist for even up to a week after the one-time consumption of gluten. So I stopped entirely, and I went back to feeling pretty good but I found that I was still having abdominal pain and issues. Mentioned it to my doctor and said I thought it was just my body detoxing from the food allergies, and he told me that I shouldn’t have any prolonged systems as any no-no food I cheat with or accidentally consume will be out of my body in 24 hours. So that’s when I started wondering about celiac because my boyfriend has it and any time I complain he says it sounds exactly like what he experienced, and it would explain why I feel a lot better without gluten but still have issues. The allergy blood test was negative for celiac, but so was my boyfriend’s (his was really bad when he got his diagnosis, had been hospitalized for weeks before they finally figured it out, he was even given a feeding tube and having gluten pumped into him and they accused him of being anorexic because he continued to lose weight in the hospital.....shows how much these doctors know what they’re doing) and apparently that’s common (the negative blood test). So I saw a gastroenterologist and requested an endoscopy. Did a gluten challenge for about 4 weeks which was absolute hell, got the biopsy, they found nothing. Not only that - they said my stomach looks completely normal.

Regardless, I’m going back to my allergen free diet. But I’m really frustrated. I have these issues still and no diagnosis but within all the research I do, all signs point toward celiac. Think I’m just gonna keep going with the diet and see if the pain and issues work themselves out and from there likely diagnose myself.

anybody in a similar situation or have any advice? 

I think I need to clear up a few misconceptions here.

celiac is  it an allergy and will not show up on any sort of food allergy testing.

Negative Celiac blood work is not common.  It can happen, but it isn't not common.

celiac damage does not show in the stomach - it is in the small intestine.

 

 

[Steeb122]

Yeah idk how to reply lol

[Steeb122]

37 minutes ago, kareng said:

I think I need to clear up a few misconceptions here.

celiac is  it an allergy and will not show up on any sort of food allergy testing.

Negative Celiac blood work is not common.  It can happen, but it isn't not common.

celiac damage does not show in the stomach - it is in the small intestine.

 

 

New to the site, not really sure how to reply but I think i just quote you? Lol

Yeah, forgive me for not being clear enough or totally accurate. When tested for food allergies I was also tested for celiac; the doctor told me that the celiac one came back negative. I’ve often had incorrect blood work for a number of things. My body’s weird and it generally takes multiple tries to get a true answer. My mom was the same way. I’ve had a number of issues that have taken a long time to be established because of ever-changing yes/no bloodwork...which just adds to my frustration with the possible celiac.  

Small intestine, yes. I said stomach even though that’s not correct, I just say the pain’s in my stomach because nobody points to where it hurts and says “yeah doc, right here in my duodenum.” Maybe you do. My bad. The point is I had the endoscopy & biopsy and apparently everything is normal despite the fact that I’m having all these issues, celiac or not.  Maybe I just didn’t do the challenge long enough. Maybe I truly don’t have celiac. But I’m mostly upset, confused, and annoyed that everything looked normal because obviously if I’m having a list of problems that are tied to that exact location, everything’s not normal. 

[Jmg]

2 hours ago, Steeb122 said:

 So I stopped entirely, and I went back to feeling pretty good but I found that I was still having abdominal pain and issues. Mentioned it to my doctor and said I thought it was just my body detoxing from the food allergies, and he told me that I shouldn’t have any prolonged systems as any no-no food I cheat with or accidentally consume will be out of my body in 24 hours. So that’s when I started wondering about celiac because my boyfriend has it and any time I complain he says it sounds exactly like what he experienced, and it would explain why I feel a lot better without gluten but still have issues. The allergy blood test was negative for celiac, but so was my boyfriend’s (his was really bad when he got his diagnosis, had been hospitalized for weeks before they finally figured it out, he was even given a feeding tube and having gluten pumped into him and they accused him of being anorexic because he continued to lose weight in the hospital.....shows how much these doctors know what they’re doing) and apparently that’s common (the negative blood test). So I saw a gastroen

terologist and requested an endoscopy. Did a gluten challenge for about 4 weeks which was absolute hell, got the biopsy, they found nothing. Not only that - they said my stomach looks completely normal.

Hi and welcome

I went through the challenge and was astonished to get a negative biopsy at the end. I had symptoms that abated on a gluten-free diet and returned during the challenge period and was sure I'd found the reason for a multitude of health issues... and then... negative! So I know something of how you feel.  The good news for me is that removing gluten made a massive difference to me. You may want to read up on non celiac gluten sensitivity here.

It's good that you've gone through testing and tried to get a definitive answer. I know you will have questions about the challenge period (likely too short) but unless you want to put yourself through it again it's not something you can influence. You need to focus on being well. If as you say the previous diet was working for you then you should resume it.

Although that said, you seem to have had a lot of issues identified by the blood test:

2 hours ago, kareng said:

wheat, dairy, soy, peanuts, tree nuts, seeds, and shellfish.

Was the blood allergy test from your doctors? Some of them are not scientifically proven. You may in time want to consider keeping your own food diary and attempting to reintroduce some of them once you're feeling better? 

Best of luck, its not easy when you dont get the definitive answers you were looking for, but you have some clues already in your past positive reaction to the gluten-free diet, so maybe start there.

 

 

 

[Ennis-TX]

JMG hit pretty on here sounds like Non Celiac Gluten Sensitivity, we have seen plenty of people with it show up here, and some of our regulars have it. It is a really medical condition despite what some doctors might say. I also second JMG on the food diary, I would say you might want to try reintroducing seeds like pumpkin, perhaps later with some digestive enzymes...they are hypo allergenic...but hell I am allergic to corn so I can not judge the immune system. I just live on pumpkin seeds, and tree nuts....also have the peanut and soy issues along with a whey allergy and a lactose intolerance for over a decade......dairy is evil lol.

On  a side note your VERY blessed to have found a love interest that requires the same medical diet as yourself, having celiac himself will be a huge support for you and make keeping a gluten free home and having meals much easier.

[kareng]

5 hours ago, Jmg said:

Hi and welcome

I went through the challenge and was astonished to get a negative biopsy at the end. I had symptoms that abated on a gluten-free diet and returned during the challenge period and was sure I'd found the reason for a multitude of health issues... and then... negative! So I know something of how you feel.  The good news for me is that removing gluten made a massive difference to me. You may want to read up on non celiac gluten sensitivity here.

It's good that you've gone through testing and tried to get a definitive answer. I know you will have questions about the challenge period (likely too short) but unless you want to put yourself through it again it's not something you can influence. You need to focus on being well. If as you say the previous diet was working for you then you should resume it.

Although that said, you seem to have had a lot of issues identified by the blood test:

Was the blood allergy test from your doctors? Some of them are not scientifically proven. You may in time want to consider keeping your own food diary and attempting to reintroduce some of them once you're feeling better? 

Best of luck, its not easy when you dont get the definitive answers you were looking for, but you have some clues already in your past positive reaction to the gluten-free diet, so maybe start there.

 

 

 

I didn't have any of that not always accurate testing.  You are taking that out  of context. 

 

[kareng]

8 hours ago, Steeb122 said:

New to the site, not really sure how to reply but I think i just quote you? Lol

Yeah, forgive me for not being clear enough or totally accurate. When tested for food allergies I was also tested for celiac; the doctor told me that the celiac one came back negative. I’ve often had incorrect blood work for a number of things. My body’s weird and it generally takes multiple tries to get a true answer. My mom was the same way. I’ve had a number of issues that have taken a long time to be established because of ever-changing yes/no bloodwork...which just adds to my frustration with the possible celiac.  

Small intestine, yes. I said stomach even though that’s not correct, I just say the pain’s in my stomach because nobody points to where it hurts and says “yeah doc, right here in my duodenum.” Maybe you do. My bad. The point is I had the endoscopy & biopsy and apparently everything is normal despite the fact that I’m having all these issues, celiac or not.  Maybe I just didn’t do the challenge long enough. Maybe I truly don’t have celiac. But I’m mostly upset, confused, and annoyed that everything looked normal because obviously if I’m having a list of problems that are tied to that exact location, everything’s not normal. 

I wanted To 

 

8 hours ago, Steeb122 said:

New to the site, not really sure how to reply but I think i just quote you? Lol

Yeah, forgive me for not being clear enough or totally accurate. When tested for food allergies I was also tested for celiac; the doctor told me that the celiac one came back negative. I’ve often had incorrect blood work for a number of things. My body’s weird and it generally takes multiple tries to get a true answer. My mom was the same way. I’ve had a number of issues that have taken a long time to be established because of ever-changing yes/no bloodwork...which just adds to my frustration with the possible celiac.  

Small intestine, yes. I said stomach even though that’s not correct, I just say the pain’s in my stomach because nobody points to where it hurts and says “yeah doc, right here in my duodenum.” Maybe you do. My bad. The point is I had the endoscopy & biopsy and apparently everything is normal despite the fact that I’m having all these issues, celiac or not.  Maybe I just didn’t do the challenge long enough. Maybe I truly don’t have celiac. But I’m mostly upset, confused, and annoyed that everything looked normal because obviously if I’m having a list of problems that are tied to that exact location, everything’s not normal. 

I wanted to get that cleared up.  We get many people & their MDs or other " medical practitioners" here that don't realize a " food allergy test" is not a Celiac test.  I have also seen where people do not get an endoscopy past the stomach.

[Jmg]

1 hour ago, kareng said:

I didn't have any of that not always accurate testing.  You are taking that out  of context. 

 

Apologies Karen I thought I was quoting Steeb122, not sure what happened there.

[Steeb122]

7 hours ago, Ennis_TX said:

JMG hit pretty on here sounds like Non Celiac Gluten Sensitivity, we have seen plenty of people with it show up here, and some of our regulars have it. It is a really medical condition despite what some doctors might say. I also second JMG on the food diary, I would say you might want to try reintroducing seeds like pumpkin, perhaps later with some digestive enzymes...they are hypo allergenic...but hell I am allergic to corn so I can not judge the immune system. I just live on pumpkin seeds, and tree nuts....also have the peanut and soy issues along with a whey allergy and a lactose intolerance for over a decade......dairy is evil lol.

On  a side note your VERY blessed to have found a love interest that requires the same medical diet as yourself, having celiac himself will be a huge support for you and make keeping a gluten free home and having meals much easier.

My primary care doctor (who gave me the blood tests) told me I likely had NCGS as well after cutting out gluten (can’t really cut out wheat without cutting out gluten, mostly). I always just assumed that was it but what triggered the idea of having celiac is that I still had minor pain and issues when I knew I hadn’t been glutened, and no other food intolerances/sensitivities/allergies I have cause the same reaction as gluten. I read every label and I cook for myself 95% of the time, accepting that the odds are I’m going to consume something I shouldn’t when I eat out. But the pain occured every time I ate and lingered after. I told my pulmonologist (who has me on 6 months of antibiotics becausw I have latent TB, and he has to ask about my stomach because of possible ulcers caused by it) what was happening and that I just chalked it up to my body not being entirely healed yet from the foods I was eating. That’s when he told me that food intolerances/allergies don’t leave damage and the reaction to anything I may eat should be gone in 24 hours and if I’m truly following an allergen free diet I shouldn’t be having any pain. Then he told me that if it’s celiac the pain would make more sense, so that’s what sparked my curiosity. I originally had the endoscopy scheduled to check for ulcers but I added that I wanted to have a biopsy for celiac as well. I know you didn’t ask for all that info, just trying to be clear lol.

and yeah, it’s nice to have him around for gluten free purposes but it doesn’t help that he loooooves milk and peanut butter. ?

[squirmingitch]

Do you have copies of your celiac blood panel? You should get them if you don't have them. this is true of all medical records. From that you would be able to tell which blood tests in the full panel that he did. There are actually 6 but often only 1 or 2 get done as a screening measure. Sometimes your insurance will not pay for more than just the 1 or 2 as a screening & you have to go to a GI in order for your insurance to pay for the full panel.

Sometimes (lots) docs think 1 positive in the panel does not mean celiac & say you're negative. Sometimes they think a low positive means you are negative. NO, a positive is a positive even if it's not sky high. Sigh.

For the endoscopy, how many biopsies were taken & from what areas? There should be 6 biopsies taken.

[Steeb122]

2 hours ago, squirmingitch said:

Do you have copies of your celiac blood panel? You should get them if you don't have them. this is true of all medical records. From that you would be able to tell which blood tests in the full panel that he did. There are actually 6 but often only 1 or 2 get done as a screening measure. Sometimes your insurance will not pay for more than just the 1 or 2 as a screening & you have to go to a GI in order for your insurance to pay for the full panel.

Sometimes (lots) docs think 1 positive in the panel does not mean celiac & say you're negative. Sometimes they think a low positive means you are negative. NO, a positive is a positive even if it's not sky high. Sigh.

For the endoscopy, how many biopsies were taken & from what areas? There should be 6 biopsies taken.

Ironically the gastroenterologist called me today and said she’d let me know the results of my biopsy in 7-10 days...whoops lol hey there is hope for me to have this disease! So this whole thread was kinda pointless. I got a separate call yesterday telling me that everything had looked normal so I assumed that included the biopsies.