Celiac Or Not?

[Casy]

Hello everyone! I was just hoping for some opinions on some symptoms. Most of these have been long standing, but I never connected them all to one possible diagnosis until very recently. I have an appointment on the 23rd with my Dr. and I want to be sure I'm not going for no reason and that I know what to say. My symptoms point me in the direction of celiac, but so many people are miserable and always in pain, and I'm not... so it leads me to question if that's what it is. And I LOVE bread and pasta.

 

-Rash that looks like HP- have had off and on since I was a teen. I took pictures of my most current outbreak on my elbow to bring to the Dr.

-Scalp psoriasis

-chronic constipation and mucous in stool. Average 1 BM a week. 

-Painful gas. Like knives in my gut. I started taking a probiotic, and that's been relieved considerably. It would double me over.

-Always have had low iron

-I shed a lot of hair

-bloating

-bad migranes as a teen (HP was worse then too) and occasional migraine now

infertility (took 4 yrs to conceive my son)

-Prone to cracks in corners of my mouth

 

So... what do y'all think?

 

Casy

 

 

[celiac sharon]

I think those are a lot of red flags. And not all celiacs have bad belly pain. Some of us have terrible bloating, gas pains and constipation. I think your thyroid needs checked as well

[celiac sharon]

And my daughter has NONE of it. Only anemia and vitamin deficiencies. Of course she is still young

[Casy]

Thanks! I'll mention the thyroid. The main reason I am doubting is that I don't have any sort of overt reaction no matter what I eat. The rash comes and goes, the scalp psoriasis is always present, as is the constipation (for the most part). I cut out milk products, and the GI symptoms seem to be better. The wort part is if I do have celiac disease and have to go off of gluten, I may never know when/if I have had gluten because I don't have an immediate reaction.

[cyclinglady]

The only way to know for sure is to get tested. There are about 300 symptoms for celiac disease (University of Cicago's Celiac website). Some never experience any at all. Some realize after their diagnosis, that minor symptoms that they ignored, were directly related to celiac disease. After a glutening, some folks take a few days for symptoms to appear. celiac disease is not an allergy -- but an autoimmune response.

Here are the tests:

-tTG IgA and tTG IgG

-DGP IgA and DGP IgG

-EMA IgA

-total serum IgA and IgG (control test)

-AGA IGA and AGA IgG - older and less reliable tests largely replace by the DGP tests

-endoscopic biopsy - make sure at least 6 samples are taken

Welcome to the forum and let us know how it goes!

[Renaye]

I have similar symptoms and have some positive blood work that suggest celiac.  I am gluten free now regardless of the testing due to having a positive ANA which suggests something autoimmune is going on but like you, I don't react to gluten.  I have terrible constipation that doesn't respond to anything except miralax and I continue to have to take more of it for it to work.  My thyroid blood work is negative but wish I could find a doctor to treat me like I have hypothyroidism just to see if it would help. I used to have a lot of pain in the mornings and found out I have several food intolerances.  I took those foods out and I have no more pain.  It may be something to look into. 

[Starlight2222]

Get tested through Enterolab; otherwise your doctor will just be testing for Celiac disease.  Enterolab.com tests for all forms of gluten sensitivity, and it is a stool sample and gene swab from your cheek...done through the mail.  I had a negative blood test through my doctor, so went undiagnosed for many more horrible years, because i was NEGATIVE for celiac.  I have non-celiac gluten sensitivity..and related caseine intolerance.  The media fails to inform the public that this type of testing has been around for many years and is accurate.  It saved my life needless to say. I sound like an advertisement, but it pains me to see millions of non-celiac people suffering, and being misled by doctors who have no knowledge of what to do.  Again, don't waste time doing elimination diets, get the test, get the test, get the test.

[cyclinglady]

Get tested through Enterolab; otherwise your doctor will just be testing for Celiac disease.  Enterolab.com tests for all forms of gluten sensitivity, and it is a stool sample and gene swab from your cheek...done through the mail.  I had a negative blood test through my doctor, so went undiagnosed for many more horrible years, because i was NEGATIVE for celiac.  I have non-celiac gluten sensitivity..and related caseine intolerance.  The media fails to inform the public that this type of testing has been around for many years and is accurate.  It saved my life needless to say. I sound like an advertisement, but it pains me to see millions of non-celiac people suffering, and being misled by doctors who have no knowledge of what to do.  Again, don't waste time doing elimination diets, get the test, get the test, get the test.

I think I will stick to scientific-based tests. Here is some interesting information about Enterolab and why their testing is not considered valid by celiac disease industry experts:

Open Original Shared Link

https://www.celiac.com/gluten-free/blog/856/entry-1546-enterolab-a-scientists-viewpoint/

[Casy]

The only way to know for sure is to get tested. There are about 300 symptoms for celiac disease (University of Cicago's Celiac website). Some never experience any at all. Some realize after their diagnosis, that minor symptoms that they ignored, were directly related to celiac disease. After a glutening, some folks take a few days for symptoms to appear. celiac disease is not an allergy -- but an autoimmune response.

Here are the tests:

-tTG IgA and tTG IgG

-DGP IgA and DGP IgG

-EMA IgA

-total serum IgA and IgG (control test)

-AGA IGA and AGA IgG - older and less reliable tests largely replace by the DGP tests

-endoscopic biopsy - make sure at least 6 samples are taken

Welcome to the forum and let us know how it goes!

Thank you! I'm going to write those down and bring with me. I'll post what they find out.

[Casy]

I have similar symptoms and have some positive blood work that suggest celiac.  I am gluten free now regardless of the testing due to having a positive ANA which suggests something autoimmune is going on but like you, I don't react to gluten.  I have terrible constipation that doesn't respond to anything except miralax and I continue to have to take more of it for it to work.  My thyroid blood work is negative but wish I could find a doctor to treat me like I have hypothyroidism just to see if it would help. I used to have a lot of pain in the mornings and found out I have several food intolerances.  I took those foods out and I have no more pain.  It may be something to look into. 

Yes, same with the Miralax. It's good to hear from those with similar symptoms. My Dad was tested for Celiac and came back negative, and now they are saying it is some type of food intolerance/allergy for him, but they aren't sure what. I'm hoping a blood test will rule it out for me... but then I'm left wondering what ELSE it could be.

[Starlight2222]

I think I will stick to scientific-based tests. Here is some interesting information about Enterolab and why their testing is not considered valid by celiac disease industry experts:

Open Original Shared Link

https://www.celiac.com/gluten-free/blog/856/entry-1546-enterolab-a-scientists-viewpoint/

Yes, the reason I was left in illness for almost a decade, was the failure of the "celiac" disease "industry experts" to understand non-celiac (different gene) gluten sensitivity.  I posted this to help the people who visit this site, with negative "celiac" tests, but with symptoms that are undiagnosed. Enterolab is scientific, and Dr. Fine is a trailblazer, again, he saved my life.  He doesn't believe in waiting for celiac disease to damage your gut to the extent that you can get a positive blood result before being diagnosed; his tests can catch the diagnosis before it gets to that stage in some people, as well, catch it early for other people who have a gluten sensitivity gene...there will be many variations depending upon a person's diet...and the sad part, is that more than half the population do have this gene.  Again, it seems good to have the blood test as well for some people who prefer to test how far their disease state has progressed, but for others, especially those with another gene (whose small intestinal intergrity has more protection, and are non-celiac), the blood test will be more often negative.  Celiac and non-celiac people are in the same boat, a vast desert with few safe foods, and constantly in search of foods that won't sicken them...we need to find every avenue to get tested, and Enterolab is a certified lab with scientific testing, and it pains me to think anyone in this forum could not be open to it after someone says it saved their life.

[kareng]

Yes, the reason I was left in illness for almost a decade, was the failure of the "celiac" disease "industry experts" to understand non-celiac (different gene) gluten sensitivity. I posted this to help the people who visit this site, with negative "celiac" tests, but with symptoms that are undiagnosed. Enterolab is scientific, and Dr. Fine is a trailblazer, again, he saved my life. He doesn't believe in waiting for celiac disease to damage your gut to the extent that you can get a positive blood result before being diagnosed; his tests can catch the diagnosis before it gets to that stage in some people, as well, catch it early for other people who have a gluten sensitivity gene...there will be many variations depending upon a person's diet...and the sad part, is that more than half the population do have this gene. Again, it seems good to have the blood test as well for some people who prefer to test how far their disease state has progressed, but for others, especially those with another gene (whose small intestinal intergrity has more protection, and are non-celiac), the blood test will be more often negative. Celiac and non-celiac people are in the same boat, a vast desert with few safe foods, and constantly in search of foods that won't sicken them...we need to find every avenue to get tested, and Enterolab is a certified lab with scientific testing, and it pains me to think anyone in this forum could not be open to it after someone says it saved their life.

I am glad you feel better, however, there is no scientific evidence right now for a " gluten sensitivity gene" or that Enterolabs are able to test for it. If you have actual scientific/ reputable studies to show any of this, please share them. However, links to a website to sell dubious lab tests does not count as reliable information.

Open Original Shared Link

"Can I be screened for non-celiac gluten sensitivity?

There are no tests to diagnose non-celiac gluten sensitivity at this time. Which means, no research has been through a scientific, evidence-based, peer-reviewed study that proves what some labs claim as a way to detect non-celiac gluten sensitivity."

[cyclinglady]

Yes, the reason I was left in illness for almost a decade, was the failure of the "celiac" disease "industry experts" to understand non-celiac (different gene) gluten sensitivity.  I posted this to help the people who visit this site, with negative "celiac" tests, but with symptoms that are undiagnosed. Enterolab is scientific, and Dr. Fine is a trailblazer, again, he saved my life.  He doesn't believe in waiting for celiac disease to damage your gut to the extent that you can get a positive blood result before being diagnosed; his tests can catch the diagnosis before it gets to that stage in some people, as well, catch it early for other people who have a gluten sensitivity gene...there will be many variations depending upon a person's diet...and the sad part, is that more than half the population do have this gene.  Again, it seems good to have the blood test as well for some people who prefer to test how far their disease state has progressed, but for others, especially those with another gene (whose small intestinal intergrity has more protection, and are non-celiac), the blood test will be more often negative.  Celiac and non-celiac people are in the same boat, a vast desert with few safe foods, and constantly in search of foods that won't sicken them...we need to find every avenue to get tested, and Enterolab is a certified lab with scientific testing, and it pains me to think anyone in this forum could not be open to it after someone says it saved their life.

I am glad it worked for you. I completely understand, but I think that taking all the currently accepted standard medical tests for diagnosing celiac disease is important. When those are negative, the other option is simply going gluten free which the experts will recommend.

If you have been reading my posts, I was official diagnosed, but my husband was not. He went gluten-free per the poor advice of my allergist and his GP. He struggled for a year learning the diet (like everyone else here), but got results. Do we think we has celiac disease or NCGI, yes! But he refuses to do a gluten challenge after 14 years of being gluten-free. He is the first to tell you that I have had it easier with a diagnosis. Test my kid? Get a bone scan? Our doctors know my diagnosis and are quick to order tests my family needs. Medical staff and family support, yes. Hubby does not get that...... It has made it easier for others in my extended family to get a diagnosis too.

Everyone has to make their own decision on how to handle their illnesses. I am glad that you are doing well.

[Sunshine Sassie]

Hey Casy, I'm in the chronic constipation club as well so I thought I'd say hi. We share a lot of symptoms (constipation with mucus, gas, bloating, rash, problems with menstrel cycle, I even have those cracks at my mouth!) I just finished up with a lot of testing and my conclusion so far is that I am either Non Celiac Gluten Sensitive or early stages of Celiac. You may be in the same boat as me or something else could be going on but I know those symptoms combined can make you miserable!

I was convinced at first that these symptoms we share had nothing to do with what I ate; I didn't understand how something I ate my entire life could be doing this to me! It took me awhile to realize how and when my body reacted to gluten. I figured I'd have an obvious reaction but I learned that everyone has a different reaction time ranging from a minute to a day or two after. If I were to eat a piece of wheat bread today I'd get pain in my right hip about twenty minutes after but be fine for the rest of the day. But the next day is when I really react-and it will happen when I go to eat something (gluten free or not) and I will start bloating up like a balloon and have gut wrenching gas. This will to continue to happen every time I eat or have a bowel movement (basically when ever my system moves) until it's out of my system completely. When I eat gluten continuously the bloating never goes away and the gas pains come and go so it was really hard to tell that I was reacting to gluten before hand.

I made the mistake of going gluten free before getting tested and it delayed my testing by about a year! I know it's tempting but I would definitely continue to eat gluten so you can get tested and get your answers as soon as possible. I'm not sure if you could have your rash looked at and tested too? I hope you post what happens at your doctor I'm interested to find out.

[Casy]

Hey Casy, I'm in the chronic constipation club as well so I thought I'd say hi. We share a lot of symptoms (constipation with mucus, gas, bloating, rash, problems with menstrel cycle, I even have those cracks at my mouth!) I just finished up with a lot of testing and my conclusion so far is that I am either Non Celiac Gluten Sensitive or early stages of Celiac. You may be in the same boat as me or something else could be going on but I know those symptoms combined can make you miserable!

I was convinced at first that these symptoms we share had nothing to do with what I ate; I didn't understand how something I ate my entire life could be doing this to me! It took me awhile to realize how and when my body reacted to gluten. I figured I'd have an obvious reaction but I learned that everyone has a different reaction time ranging from a minute to a day or two after. If I were to eat a piece of wheat bread today I'd get pain in my right hip about twenty minutes after but be fine for the rest of the day. But the next day is when I really react-and it will happen when I go to eat something (gluten free or not) and I will start bloating up like a balloon and have gut wrenching gas. This will to continue to happen every time I eat or have a bowel movement (basically when ever my system moves) until it's out of my system completely. When I eat gluten continuously the bloating never goes away and the gas pains come and go so it was really hard to tell that I was reacting to gluten before hand.

I made the mistake of going gluten free before getting tested and it delayed my testing by about a year! I know it's tempting but I would definitely continue to eat gluten so you can get tested and get your answers as soon as possible. I'm not sure if you could have your rash looked at and tested too? I hope you post what happens at your doctor I'm interested to find out.

Thanks for telling me about your situation! I went to the doc today, and thankfully she agreed something not normal was going on. After all the labs come back next week, she said if celiac didn't show up, we'd go from there... probably to a gastroenterologist.

 

I seem to have been able to cut down on the gas pains and constipation over the last couple of weeks by cutting milk out of my diet... of course, I also broke out in a rash after I'd already stopped drinking milk, but it's some progress, I guess. I hesitate to get too excited that I found a solution, because I have had brief periods of normal BMs, and then it's back to constipation land. I also read that celiac sufferers often develop problems with dairy.

 

Anyway, at this point I'm waiting for the labs to come back. I haven't cut out gluten because I know it needs to be present for testing. And I like it. A lot. I don't have as severe symptoms as a lot of other folks, but if it is celiac, I need to know!