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Hi all!

I went to my primary care doctor at the beginning of May with major GI upset and a super foggy head. I am overweight, so she immediately thought it was my gall bladder but ran multiple blood tests, including a celiac panel. The only test that came back abnormal at all was my celiac panel. An abdominal ultrasound came back normal, with the exception of a known case of non alcohol fatty liver disease. Based on these results, she informed me that I almost certainly have celiac disease and referred me to GI for further testing.

I finally saw the GI yesterday. I've continued to eat gluten since it's necessary for a confirmation, but I feel awful after I eat it. My brain becomes so foggy that I really shouldn't drive. Anyway, the GI doctor took one look at my test results and said that I do not have celiac disease because I don't have any of the symptoms and none of my other blood work indicates that I have celiac disease (he specifically cited anemia as one factor, which I do not have an issue with). He basically refused to do an endoscope and told me that I have IBS and all of my issues are due to my weight. He said the foggy head was because I have "undiagnosed sleep apnea and blood is being sent to my intestines instead of my head after eating" and I should have a sleep study done (I do not have ANY symptoms of sleep apnea except, I guess, foggy head).

My test results were:

Deamidated Gliadin ABS, IgA - 82 (Strong Positive>30)

tTG IGA - <2 (Negative 0-3)

Immunoglobulin A - 104 (Normal 87-352)

What do you guys think? I feel better when I don't eat gluten, but I'm not sure if it's an intolerance or sensitivity issue or if it could be full-blown celiac disease. I thought I had an answer but now I'm back at square one and am kind of lost on what to do next. I've already contacted my PCM for a follow up with her, but I thought you good people could provide some insight from your experiences. :)

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I'll hit the sleep apnea part. I used to be really foggy headed and tired , had the sleep study and was found to have severe sleep apnea. The Cpap is super easy to use and fixed me right up. I no longer get so tired I shouldn't drive. Still a bit foggy but I think that's just me. There's nothing to lose to do the sleep study. It's the cost of an office visit copay. Then you can tick that box off your doctors list.  And it might help more than you think.

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26 minutes ago, cdwiggy said:

said that I do not have celiac disease because I don't have any of the symptoms

Celiac can present with many different symptoms or even none (silent celiac). You have GI issues, brain fog and I may be wrong but the non alcohol fatty liver seems to be related to celiac: https://www.ncbi.nlm.nih.gov/pubmed/25617505 

Can you get a second opinion? 

Alternatively, you could try writing a letter saying that:  Given my test result, alongside the following symptoms and my observed reactions to gluten etc can you please explain how you are eliminating celiac as a potential problem? A letter can be harder to dismiss than a verbal request in a consult.

Best of luck!

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10 minutes ago, Victoria1234 said:

I'll hit the sleep apnea part. I used to be really foggy headed and tired , had the sleep study and was found to have severe sleep apnea. The Cpap is super easy to use and fixed me right up. I no longer get so tired I shouldn't drive. Still a bit foggy but I think that's just me. There's nothing to lose to do the sleep study. It's the cost of an office visit copay. Then you can tick that box off your doctors list.  And it might help more than you think.

Was your foggy headedness related to gluten ingestion? I only get it when I eat gluten. It passes after a couple of hours and I'm fine when I eat gluten free.

I've already messaged my PCM about all of this, so I'll see if she thinks I need to go for a sleep study. I have military health insurance, so I have to have a referral for everything.

Edited by cdwiggy
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5 minutes ago, Jmg said:

Celiac can present with many different symptoms or even none (silent celiac). You have GI issues, brain fog and I may be wrong but the non alcohol fatty liver seems to be related to celiac: https://www.ncbi.nlm.nih.gov/pubmed/25617505 

Can you get a second opinion? 

Alternatively, you could try writing a letter saying that:  Given my test result, alongside the following symptoms and my observed reactions to gluten etc can you please explain how you are eliminating celiac as a potential problem? A letter can be harder to dismiss than a verbal request in a consult.

Best of luck!

I have a sneaking suspicion that he meant "you don't look emaciated" when he said I don't have any of the symptoms, based on his insistence that all of my problems were related to my weight. He suggested I lose 100 pounds, which would make me weigh less than I did at 13 years old (and I was not an overweight child), and recommended weight loss surgery, which I do not qualify for.

I'm working on getting a second opinion, but I have to go through my primary doctor due to my health insurance (US military insurance). I refuse to go back to a doctor who blames everything on my weight when my weight is partially a result of going years without medical diagnoses (hypothyroid and polycystic ovarian syndrome -- I gained 50 pounds in 6 months and still haven't been able to lose it) because I couldn't convince a doctor that there was something wrong with me.

Your post did make me feel a lot better. I was starting to question if I was making excuses for myself, but I'm starting to think that this type of situation is common with people who aren't classic celiac cases after reading other threads. If they won't send me to another doctor, I'll see if I can contact him via email.

Thank you for your input!

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10 minutes ago, cdwiggy said:

I have a sneaking suspicion that he meant "you don't look emaciated" when he said I don't have any of the symptoms, based on his insistence that all of my problems were related to my weight. He suggested I lose 100 pounds, which would make me weigh less than I did at 13 years old (and I was not an overweight child), and recommended weight loss surgery, which I do not qualify for.

I'm working on getting a second opinion, but I have to go through my primary doctor due to my health insurance (US military insurance). I refuse to go back to a doctor who blames everything on my weight when my weight is partially a result of going years without medical diagnoses (hypothyroid and polycystic ovarian syndrome -- I gained 50 pounds in 6 months and still haven't been able to lose it) because I couldn't convince a doctor that there was something wrong with me.

Your post did make me feel a lot better. I was starting to question if I was making excuses for myself, but I'm starting to think that this type of situation is common with people who aren't classic celiac cases after reading other threads. If they won't send me to another doctor, I'll see if I can contact him via email.

Thank you for your input!

You're welcome :)

I don't want to attack your doctor, he's the one with the knowledge, experience, qualifications etc. but it does seem as if his conception of celiac is a little narrow. There's some links and further info on testing here and the forum FAQ is stickied above as well.  

Finally, even if you do exclude celiac don't take that to mean that you shouldnt give the gluten-free diet a chance. It could be that you're non celiac gluten sensitive like me! So once testing is over try the diet regardless and see for yourself!

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1 hour ago, cdwiggy said:

My test results were:

Deamidated Gliadin ABS, IgA - 82 (Strong Positive>30)

tTG IGA - <2 (Negative 0-3)

Immunoglobulin A - 104 (Normal 87-352)

What do you guys think?

I think you need another GI. What did he say those positive, STRONG positive results were from if not celiac? If your GP is a good one you could ask if he will give you an official diagnosis if you go gluten free and those numbers go down. Your body is making antibodies in response to gluten. IBS, being overweight or being female doesn't cause those antibodies to go up. You mentioned that he is a military doctor, do keep in mind if you are active duty a diagnosis may result in a medical discharge.

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1 minute ago, ravenwoodglass said:

I think you need another GI. What did he say those positive, STRONG positive results were from if not celiac? If your GP is a good one you could ask if he will give you an official diagnosis if you go gluten free and those numbers go down. Your body is making antibodies in response to gluten. IBS, being overweight or being female doesn't cause those antibodies to go up. You mentioned that he is a military doctor, do keep in mind if you are active duty a diagnosis may result in a medical discharge.

I wish I was making this up -- he said it was a false positive. I really don't think he knew the difference between the old gliadin tests and the deamidated gliadin test because he said "I don't understand why they even do this antibody test anymore." I didn't argue with him because if he didn't know the difference between the two I don't want him treating me anyway.

My PCM has received the message I sent and is working on a plan (that's their generic response), so hopefully I'll know something today or tomorrow. I already kind of asked my GP about a diagnosis without a referral, but she didn't want to say for sure without a scope. She did tell me that if I didn't want to deal with the referral, I could try to go gluten free for 6 weeks and see if I felt better, so I may ask if I can try that and retest my antibodies for a diagnosis. I'll even take non-celiac gluten sensitivity over "you're just overweight."

I'm a military dependent, so no discharge worries. :)

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42 minutes ago, Jmg said:

You're welcome :)

I don't want to attack your doctor, he's the one with the knowledge, experience, qualifications etc. but it does seem as if his conception of celiac is a little narrow. There's some links and further info on testing here and the forum FAQ is stickied above as well.  

Finally, even if you do exclude celiac don't take that to mean that you shouldnt give the gluten-free diet a chance. It could be that you're non celiac gluten sensitive like me! So once testing is over try the diet regardless and see for yourself!

Thank you for the links! I've been looking around the site for information and it has been so useful!

He mentioned non celiac gluten sensitivity, but immediately said that he doesn't recommend going gluten free for anyone without celiac. I think I'm going to disregard the entire visit and seek a second opinion or, like ravenwoodglass said, see if my GP will retest my antibodies after I follow a gluten free diet for awhile.

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1 hour ago, cdwiggy said:

Was your foggy headedness related to gluten ingestion? I only get it when I eat gluten. It passes after a couple of hours and I'm fine when I eat gluten free.

I've already messaged my PCM about all of this, so I'll see if she thinks I need to go for a sleep study. I have military health insurance, so I have to have a referral for everything.

Honestly I don't recall. It was all around the same time. I got off gluten first and then had the sleep study, I think in that order. The apnea was my number 1 problem related to brain fog as I was sooooo sleepy all the time. I don't think in my adult life I ever made it thru a movie without falling asleep. Bit in 2008 I was totally on my own and didn't know about this board then. Wish I would've Googled and found it. Was only concerned with what not to eat back then, and getting rid of my abdominal pain. Didn't know my dh was related to it then either, till it disappeared. 

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40 minutes ago, cdwiggy said:

I wish I was making this up -- he said it was a false positive. I really don't think he knew the difference between the old gliadin tests and the deamidated gliadin test because he said "I don't understand why they even do this antibody test anymore." I didn't argue with him because if he didn't know the difference between the two I don't want him treating me anyway.

 

These 2 tests are basically the same test except the newer version, the deamidated gliadin test, is more sensitive than the older version.  Both tests are valid and very useful when included in a Celiac panel.  I was diagnosed via blood work using the older test as I was diagnosed 12 years ago.  But I have both tests run when doing antibodies every once in a while to check to see where they are.  Both test for reaction to gluten that you are eating so the high number you got is definitely NOT a false positive. 

I am glad you are getting a new doctor because this one scares me with his lack of basic knowledge! 

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Hi!

i want you to know that I ONLY tested positive on the DGP IgA (even in follow-up testing and different labs).  My GI was celiac-savvy and ordered a endoscopy/biopsies to confirm my celiac diagnosis.  You only need one positive on the celiac panel.  My only symptom at the time was anemia.  My ferritin was very low and I had already gone through menopause, so doctors could no longer blame it on menstruation.

Please consider finding another GI and get a second opinion.  Even a large and reputable celiac center states that you just need one positive on the panel to move forward to an endoscopy.  There are over 300 symptoms attributed to celiac disease.  Some people have none!!!!!

http://www.cureceliacdisease.org/screening/

Edited by cyclinglady

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I’d be interested in hearing what you’re eating, gluten wise, that causes you to feel bad.

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Please, please, please insist on another opinion.  I only tested positive with the deamidated gliadin antibodies, which led to an endoscopic biopsy.  Visual examination of my intestines did not look to be celiac either; however, the biopsies did prove positive for celiac with increased intraepithelial lymphocytes.  I did not have the typical symptoms either and was dismissed by many  physicians, who also told me to lose weight and exercise.  By the time I finally got someone to take me seriously (more than 3 years once the diarrhea started) I was walking with a walker, had serious memory issues, neuropathy, and the classic diarrhea.  It's been a year now on a gluten-free diet and I'm doing so much better.  I'm down over 40 pounds, eat more than I have in years, and no longer need a walker.  I have been diagnosed with not only celiac but gluten ataxia as well.  My physician believes I was born with celiac and was just never diagnosed as my symptoms weren't "classic."  I'm now 61 and some of the neurological damage will never be resolved.  

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4 hours ago, Victoria1234 said:

Honestly I don't recall. It was all around the same time. I got off gluten first and then had the sleep study, I think in that order. The apnea was my number 1 problem related to brain fog as I was sooooo sleepy all the time. I don't think in my adult life I ever made it thru a movie without falling asleep. Bit in 2008 I was totally on my own and didn't know about this board then. Wish I would've Googled and found it. Was only concerned with what not to eat back then, and getting rid of my abdominal pain. Didn't know my dh was related to it then either, till it disappeared. 

Oh wow, that sounds tough! My foggy head definitely got better when I quit eating as much gluten, and I have definitely noticed that it gets worse when I eat anything with gluten in it. Apnea scares me because I have issues falling asleep (but not staying asleep) and I feel a CPAP would make falling asleep even harder. I'm so glad I found this board now because everyone has really helped reinforce that my gut (ha) was right about my GI.

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6 hours ago, cdwiggy said:

Hi all!

I went to my primary care doctor at the beginning of May with major GI upset and a super foggy head. I am overweight, so she immediately thought it was my gall bladder but ran multiple blood tests, including a celiac panel. The only test that came back abnormal at all was my celiac panel. An abdominal ultrasound came back normal, with the exception of a known case of non alcohol fatty liver disease. Based on these results, she informed me that I almost certainly have celiac disease and referred me to GI for further testing.

I finally saw the GI yesterday. I've continued to eat gluten since it's necessary for a confirmation, but I feel awful after I eat it. My brain becomes so foggy that I really shouldn't drive. Anyway, the GI doctor took one look at my test results and said that I do not have celiac disease because I don't have any of the symptoms and none of my other blood work indicates that I have celiac disease (he specifically cited anemia as one factor, which I do not have an issue with). He basically refused to do an endoscope and told me that I have IBS and all of my issues are due to my weight. He said the foggy head was because I have "undiagnosed sleep apnea and blood is being sent to my intestines instead of my head after eating" and I should have a sleep study done (I do not have ANY symptoms of sleep apnea except, I guess, foggy head).

My test results were:

Deamidated Gliadin ABS, IgA - 82 (Strong Positive>30)

tTG IGA - <2 (Negative 0-3)

Immunoglobulin A - 104 (Normal 87-352)

What do you guys think? I feel better when I don't eat gluten, but I'm not sure if it's an intolerance or sensitivity issue or if it could be full-blown celiac disease. I thought I had an answer but now I'm back at square one and am kind of lost on what to do next. I've already contacted my PCM for a follow up with her, but I thought you good people could provide some insight from your experiences. :)

DGP IGA  can produce a false positive in liver disease. I was told this by not only a specialist but also if you Google liver and DGP IGA you will find a link to a publishEd study where some of the folks who were positive for that particular test were negative for the Celiac Gene.

 that being said, some people only test positive to that test who do have celiac disease. Celiac disease can also come with a heightened risk of elevated liver enzymes and liver trouble. 

So.... Now you have the three C's. Coincidence? Correlation? Causation.

Get a celiac saavy GI, get an edoscopy and keep us posted! 

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3 hours ago, Gemini said:

These 2 tests are basically the same test except the newer version, the deamidated gliadin test, is more sensitive than the older version.  Both tests are valid and very useful when included in a Celiac panel.  I was diagnosed via blood work using the older test as I was diagnosed 12 years ago.  But I have both tests run when doing antibodies every once in a while to check to see where they are.  Both test for reaction to gluten that you are eating so the high number you got is definitely NOT a false positive. 

I am glad you are getting a new doctor because this one scares me with his lack of basic knowledge! 

That's what I understood, too, but he made it sound like they were all worthless, and from what he said I just assumed he was talking about the less specific test. I'm definitely getting a second opinion after everything everyone has said here!

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2 minutes ago, cdwiggy said:

Oh wow, that sounds tough! My foggy head definitely got better when I quit eating as much gluten, and I have definitely noticed that it gets worse when I eat anything with gluten in it. Apnea scares me because I have issues falling asleep (but not staying asleep) and I feel a CPAP would make falling asleep even harder. I'm so glad I found this board now because everyone has really helped reinforce that my gut (ha) was right about my GI.

I talked myself into thinking the mask was a fancy spa treatment. It worked for me, but at that time I had no trouble falling asleep at all. Now I have to take a trazadone to fall asleep as I'm under so much stress and I'd stay up all night worrying.

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2 hours ago, cyclinglady said:

Hi!

i want you to know that I ONLY tested positive on the DGP IgA (even in follow-up testing and different labs).  My GI was celiac-savvy and ordered a endoscopy/biopsies to confirm my celiac diagnosis.  You only need one positive on the celiac panel.  My only symptom at the time was anemia.  My ferritin was very low and I had already gone through menopause, so doctors could no longer blame it on menstruation.

Please consider finding another GI and get a second opinion.  Even a large and reputable celiac center states that you just need one positive on the panel to move forward to an endoscopy.  There are over 300 symptoms attributed to celiac disease.  Some people have none!!!!!

http://www.cureceliacdisease.org/screening/

I am definitely getting a second opinion! I can't keep feeling awful all the time. Thank you for the encouragement!

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6 minutes ago, ironictruth said:

DGP IGA  can produce a false positive in liver disease. I was told this by not only a specialist but also if you Google liver and DGP IGA you will find a link to a publishEd study where some of the folks who were positive for that particular test were negative for the Celiac Gene.

 that being said, some people only test positive to that test who do have celiac disease. Celiac disease can also come with a heightened risk of elevated liver enzymes and liver trouble. 

So.... Now you have the three C's. Coincidence? Correlation? Causation.

Get a celiac saavy GI, get an edoscopy and keep us posted! 

Interesting! I'll have to check and see if my liver enzymes were checked the last time they did labs, but I've never had issues before.

Do you (or does anyone) know of a resource to find a GI that specializes in celiac disease? I tried to look before I was referred to the one I saw yesterday, but I didn't have much luck. I'm near Sacramento if anyone has a recommendation!

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1 hour ago, plumbago said:

I’d be interested in hearing what you’re eating, gluten wise, that causes you to feel bad.

After I received my test results, I stopped eating gluten for the most part. After I stopped, any time I ate anything containing gluten I noticed that I felt bad afterward. I ate two cookies on Tuesday and I'm still recovering from that, GI-wise. The foggy head only lasts a couple of hours. Before I cut back on gluten, I noticed that I felt absolutely awful after eating noodle-based Lean Cuisines. I was trying to lose weight and ate frozen meals 2-3 times a week because they were easy. My GP thought I had IBS initially and recommended that I only eat food that is easy to digest, like white toast. Those two weeks between my initial appointment and a preliminary celiac diagnosis were pure hell because I was eating toast for breakfast and lunch.

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46 minutes ago, Gluten-free me said:

Please, please, please insist on another opinion.  I only tested positive with the deamidated gliadin antibodies, which led to an endoscopic biopsy.  Visual examination of my intestines did not look to be celiac either; however, the biopsies did prove positive for celiac with increased intraepithelial lymphocytes.  I did not have the typical symptoms either and was dismissed by many  physicians, who also told me to lose weight and exercise.  By the time I finally got someone to take me seriously (more than 3 years once the diarrhea started) I was walking with a walker, had serious memory issues, neuropathy, and the classic diarrhea.  It's been a year now on a gluten-free diet and I'm doing so much better.  I'm down over 40 pounds, eat more than I have in years, and no longer need a walker.  I have been diagnosed with not only celiac but gluten ataxia as well.  My physician believes I was born with celiac and was just never diagnosed as my symptoms weren't "classic."  I'm now 61 and some of the neurological damage will never be resolved.  

Oh my gosh, that is an amazing turn around! I'm already seeking a second opinion and even if they won't send me to another GI I'm going to stop eating gluten. I'm glad you're doing so much better!

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I had high antibodies, no symptoms, and a positive biopsy.  I am glad you are getting a second opinion.  I'm glad celiac can be treated (gluten free diet) without a doctor's prescription, since so many doctors do a poor job diagnosing it.

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1 hour ago, cdwiggy said:

Interesting! I'll have to check and see if my liver enzymes were checked the last time they did labs, but I've never had issues before.

Do you (or does anyone) know of a resource to find a GI that specializes in celiac disease? I tried to look before I was referred to the one I saw yesterday, but I didn't have much luck. I'm near Sacramento if anyone has a recommendation!

You mentioned the fatty liver, so my mind went there right away. 

Try your local celiac group for docs. 

Or, 

https://celiac.org/blog/2017/06/dr-sheila-crowe-becomes-president-american-gastroenterological-association/

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3 hours ago, cdwiggy said:

...

Do you (or does anyone) know of a resource to find a GI that specializes in celiac disease? I tried to look before I was referred to the one I saw yesterday, but I didn't have much luck. I'm near Sacramento if anyone has a recommendation!

There are several celiac centers in CA.  You may have to travel a bit to get to one.    Of course that's pretty normal for CA anyway! :)

https://www.beyondceliac.org/celiac-disease/additional-information/hospitals-labs/

 

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