Potential Celiac? PLEASE help.

[caitlynmariah]

Hi to any & all who read my post, and an advanced thank you to those who reply,

 

     My post may be kind of robust & lengthily, but please read until the end if you are able. To give a sort of "back story" here, I'll explain my situation in a nutshell. In November of 2014 I was diagnosed with a gluten intolerance by my allergist after recurrent, severe mouth ulcers and a bodily rash. I had a blood allergy panel, but NOT a Celiac specific panel, which ruled out other food allergies completely - corn, pea, chickpea, chicken, tomato, egg, milk, etc. My allergist suggested a gluten-free diet, which I adopted & have been adhering to since then. Recently, I've been acutely sick since August of 2016, so we're talking a year plus now. My symptoms began with a burning abdominal sensation, pain after eating, premature and uncomfortable full feeling, bloating, etc. My internist referred me to my current GI doctor where I was diagnosed with GERD (chronic acid reflux) , and prescribed Omeprazole, which I still take daily. My next appointment in February had me still feeling awful & my GI doctor decided to perform an upper endoscopy, which I did in March. He was looking for ulcers, evidence of bleeding or infectious disease, and Celiac. Mind you, I had informed him that I've been eating strictly gluten free for almost three years now. He claimed this really didn't matter? This has left me wondering. Anyway, the results came up empty, but I was found to have evidence of gastritis. Then came the rest of my symptoms - frequent diarrhea, bloody diarrhea, extremely greasy stools, stools that float, mucus in stools, unable to "wait" to use the bathroom (I.e. Urgency), alternations of diarrhea and constipation, weight loss, low grade fever, EXTREME fatigue, poor concentration, memory loss, cognitive decline, and my mouth sores have reared their ugly head once again. After I first went gluten-free, the ulcers probably cleared up for a good year at least, which was heaven on earth for me. Now, they're back with a ruthless vengeance. As we speak, I've barely recovered from one for a day or so, and I'm down with two more. You can't even make this stuff up. After I addressed these new symptoms with my GI, he was concerned I may have had Crohn's Disease or Colitis, so he performed a colonoscopy, which ruled out both conditions through gross observation & biopsy samples. Since colonoscopies can only read so much of your colon & terminal small intestine, I then had a  PillCam to see the rest. The only results he could suggest was that I have a "slow bowel transit," so I was diagnosed with Irritable Bowel Syndrome. The umbrella term for all intestinal and abdominal suffering with no definitive cause. 

 

    Summary of my bible here is that I'm still suffering greatly. The intestinal issues are really giving me poor quality of life, and these pervasive mouth ulcers are more than I can bare anymore with the pain, inability to eat, weight loss, etc. it's all a sick and harrowing cycle that I am caught in the middle of. In saying this, I'm almost curious that I could have Celiac disease that was horribly missed. If I had already been gluten free & a biopsy was taken it would appear as though I'm a healthy individual, no? I was informed you had to be eating a strict gluten FILLED diet prior to ANY testing. ALL of my testing was performed after I already went gluten free, which could have altered results horribly.

 

I'm almost crazy enough to think that if this is the case, I'm going to eat gluten just so I can be re-tested because I can't go on like this anymore. 

 

Can anyone please clarify and/or suggest something?

[ravenwoodglass]

I am so sorry you have been suffering so much for so long. Yes you do need to eating gluten for celiac related testing. There is a lot we have to do to be safe. While gluten free have you been using things like a seperate toaster, dedicated condiments, butters,jams etc? have you been baking with wheat flour for others? What is your diet typically like? I ask because your doctor is woefully ignorant of the diagnosis process for celiac so he may also not have told you what you need to do to be safe.  The Newbie 101 thread at the top of the Coping section has a lot of info.

I hope you get some answers soon.

One more thing. Are you being woken up at night with D? That is a good sign that you don't have IBS. IBS D hits when folks are awake.

[caitlynmariah]

2 minutes ago, ravenwoodglass said:

I am so sorry you have been suffering so much for so long. Yes you do need to eating gluten for celiac related testing. There is a lot we have to do to be safe. While gluten free have you been using things like a seperate toaster, dedicated condiments, butters,jams etc? have you been baking with wheat flour for others? What is your diet typically like? I ask because your doctor is woefully ignorant of the diagnosis process for celiac so he may also not have told you what you need to do to be safe.  The Newbie 101 thread at the top of the Coping section has a lot of info.

I hope you get some answers soon.

One more thing. Are you being woken up at night with D? That is a good sign that you don't have IBS. IBS D hits when folks are awake.

No, my kitchen is NOT Celiac safe/friendly. Although I do maintain a gluten free diet and use only gluten free products in my cooking/backing, there is high risk for cross contamination with toaster use, other appliances, butters, sauces, etc. Same goes for the rarer occasion that I'll dine out - I eat gluten free & only from a gluten free menu, but I don't only eat at places with Celiac friendly kitchens/prep space.

 

From what I can remember, I'd like to say I have been woken up with issues just a few times though, and not anything significant. I won't dispute the probability I have IBS, however, I think there is more going on, too.  

 

Thank you for your kind words & well wishes.

[cyclinglady]

I am so sorry that you are sick.  I think you have to decide if you want to get back on a gluten free diet and get tested or remain gluten free and seriously eat as if you had celiac disease or NCGI.  That means following celiac cross contamination protocol.  Like not sharing toasters (unless you use toaster bags), condiments  (unless squeeze bottles), etc.  NO dining out until you are seeing significant improvement.   Each time you dine out it is like playing Russian Roulette.  Go when you have mastered the diet and can afford to take a hit.  

Here is the deal.  Celiacs all react differently.  If they get "glutened" it can generate symptoms swiftly or it can take a while for those antibodies to ramp up and you will not feel the effects for a day or so.  It can take weeks, months or years for antibodies to stop attacking your body.  A few gluten exposures, antibodies ramp up, you feel awful, start to recover and then you take another hit from gluten.  It can be a vicious cycle.  Many celiacs take a long time to recover, but the learning curve to the diet is steep.  I think you realize that now.  I won't get into developing other concurrent AI issues after repeated glutenings.  

Your doctor does not sound celiac-savvy.  Not that all GIs need to be experts, but they should keep up on research and follow protocol as recommended by the GI Association.  Consider a new GI.

Can you do this diet without a diagnosis?  Yes.  While I was formally diagnosed four years ago, my hubby went gluten free 16 years ago per the poor advice of two medical doctors.  He refuses to do a challenge now because we know that gluten makes him sick.  So, he is just as careful as I am.  

Consider getting another family member tested who may have celiac symptoms.  This is a genetic related disease.  

The pill camera can catch celiac disease, but not always because villi are microscopic.  I imagine it mostly catches severe damage that affects the actual structure of the small intestine.   At least you might have ruled out Crohn's.  The GI might have missed areas if damaged.  The small intestine is a very long tube and if stretched out larger than a tennis court!  Get all copies of your test results from your doctor.  You need to keep advocating and having those records in your possession is priceless. 

Take care.  

[ironictruth]

3 hours ago, caitlynmariah said:

Hi to any & all who read my post, and an advanced thank you to those who reply,

 

     My post may be kind of robust & lengthily, but please read until the end if you are able. To give a sort of "back story" here, I'll explain my situation in a nutshell. In November of 2014 I was diagnosed with a gluten intolerance by my allergist after recurrent, severe mouth ulcers and a bodily rash. I had a blood allergy panel, but NOT a Celiac specific panel, which ruled out other food allergies completely - corn, pea, chickpea, chicken, tomato, egg, milk, etc. My allergist suggested a gluten-free diet, which I adopted & have been adhering to since then. Recently, I've been acutely sick since August of 2016, so we're talking a year plus now. My symptoms began with a burning abdominal sensation, pain after eating, premature and uncomfortable full feeling, bloating, etc. My internist referred me to my current GI doctor where I was diagnosed with GERD (chronic acid reflux) , and prescribed Omeprazole, which I still take daily. My next appointment in February had me still feeling awful & my GI doctor decided to perform an upper endoscopy, which I did in March. He was looking for ulcers, evidence of bleeding or infectious disease, and Celiac. Mind you, I had informed him that I've been eating strictly gluten free for almost three years now. He claimed this really didn't matter? This has left me wondering. Anyway, the results came up empty, but I was found to have evidence of gastritis. Then came the rest of my symptoms - frequent diarrhea, bloody diarrhea, extremely greasy stools, stools that float, mucus in stools, unable to "wait" to use the bathroom (I.e. Urgency), alternations of diarrhea and constipation, weight loss, low grade fever, EXTREME fatigue, poor concentration, memory loss, cognitive decline, and my mouth sores have reared their ugly head once again. After I first went gluten-free, the ulcers probably cleared up for a good year at least, which was heaven on earth for me. Now, they're back with a ruthless vengeance. As we speak, I've barely recovered from one for a day or so, and I'm down with two more. You can't even make this stuff up. After I addressed these new symptoms with my GI, he was concerned I may have had Crohn's Disease or Colitis, so he performed a colonoscopy, which ruled out both conditions through gross observation & biopsy samples. Since colonoscopies can only read so much of your colon & terminal small intestine, I then had a  PillCam to see the rest. The only results he could suggest was that I have a "slow bowel transit," so I was diagnosed with Irritable Bowel Syndrome. The umbrella term for all intestinal and abdominal suffering with no definitive cause. 

 

    Summary of my bible here is that I'm still suffering greatly. The intestinal issues are really giving me poor quality of life, and these pervasive mouth ulcers are more than I can bare anymore with the pain, inability to eat, weight loss, etc. it's all a sick and harrowing cycle that I am caught in the middle of. In saying this, I'm almost curious that I could have Celiac disease that was horribly missed. If I had already been gluten free & a biopsy was taken it would appear as though I'm a healthy individual, no? I was informed you had to be eating a strict gluten FILLED diet prior to ANY testing. ALL of my testing was performed after I already went gluten free, which could have altered results horribly.

 

I'm almost crazy enough to think that if this is the case, I'm going to eat gluten just so I can be re-tested because I can't go on like this anymore. 

 

Can anyone please clarify and/or suggest something?

 I had a pillcam done two and a half months after I went gluten-free and it only showed gastropathy.  three and a half months before the pillcam and endoscopy showed damage consistent with celiac.  That damage was after a 10 or 11 week gluten challenge.

 prior to that I was gluten-free for a number of month, though probably not  cautious enough. endoscopy during that time showed only inflammation.

 prior to the above, I was gluten-free after some mild positive blood work and went on a six-week gluten Challenge and my biopsy was absolutely perfect. 

 my third endoscopy was initially reAd to show an increase in a certain cell only and then went on, upon further inspection by the specialist, to show damage consistent with celiac.

 it was the continued issues after to endoscopIes  that finally made me resume eating gluten for a longer  time and going to see a Celiac specialist out of state.

 it's been over three months and I'm still having symptoms.

[squirmingitch]

When the doc did the endoscopy, did he take biopsies? How many? From what locations? Get your records!!!! If he didn't take biopsies for celiac disease then he can NOT say you don't have it. 99% of the time, villi damage can not be SEEN by the GI doc during the endoscopy. And yes, the doc has no clue when saying it doesn't matter that you were gluten free for 3 years!

[Noobette]

The beginning of your story sounds very much like mine. I stopped eating gluten regularly when I adopted a mostly paleo diet years ago (bonus: my lifelong canker sores disappeared!). When I got 23andme testing done and learned I have both high-risk celiac genes, I stopped eating gluten altogether, thinking I couldn't trigger celiac if I didn't have gluten exposure. But, since I didn't have a celiac diagnosis or symptoms, I wasn't careful about cross-contamination. 

Then I got sick. My symptoms were vague: bloating, food sitting like a rock in my stomach after eating, exercise intolerance, weight loss, chest tightness. I had a bunch of tests, tried omeprazole, and eventually had an endoscopy. Because I hadn't eaten gluten in a year, I didn't expect any results suggesting celiac, but sure enough, my biopsies came back as Marsh 1: inconclusive, but all the other reasons to cause this result had already been ruled out or were very unlikely. I then had bloodwork for celiac, which was negative, as expected for anyone on a gluten-free diet. At this point I was sent to a gastroenterologist, who said she could not definitively diagnose me with celiac, and that my options were either to assume I have celiac and live like a celiac, or to do the full 12-week gluten challenge and then repeat all the testing.

i didn't want to take the risk of triggering another autoimmune disease by doing the gluten challenge, so I cleaned up my kitchen, replaced my cutting boards, cast iron pans, and anything plastic or silicone, and confined gluten to one corner of the counter. I started being the annoying person at restaurants and potlucks asking a thousand questions. And my symptoms went away.

i still don't know whether I have celiac. I struggle with the restrictions it places on my life outside of my home (travel, social life). Periodically I wonder whether I shoukd just do the gluten challenge so I know. But I'm afraid of the possible risks.

Your allergist did you a great disservice my telling you to go on a gluten-free diet without testing you for celiac. But that ship has sailed. At this point I would say your choices are the same as mine: either do a complete 12-week gluten challenge and then retest, or decide to live as if you had a firm celiac diagnosis. It can be a tough decision. Good luck and I hope you figure it out and get better very soon!

 

[caitlynmariah]

On 9/22/2017 at 2:56 PM, cyclinglady said:

I am so sorry that you are sick.  I think you have to decide if you want to get back on a gluten free diet and get tested or remain gluten free and seriously eat as if you had celiac disease or NCGI.  That means following celiac cross contamination protocol.  Like not sharing toasters (unless you use toaster bags), condiments  (unless squeeze bottles), etc.  NO dining out until you are seeing significant improvement.   Each time you dine out it is like playing Russian Roulette.  Go when you have mastered the diet and can afford to take a hit.  

Here is the deal.  Celiacs all react differently.  If they get "glutened" it can generate symptoms swiftly or it can take a while for those antibodies to ramp up and you will not feel the effects for a day or so.  It can take weeks, months or years for antibodies to stop attacking your body.  A few gluten exposures, antibodies ramp up, you feel awful, start to recover and then you take another hit from gluten.  It can be a vicious cycle.  Many celiacs take a long time to recover, but the learning curve to the diet is steep.  I think you realize that now.  I won't get into developing other concurrent AI issues after repeated glutenings.  

Your doctor does not sound celiac-savvy.  Not that all GIs need to be experts, but they should keep up on research and follow protocol as recommended by the GI Association.  Consider a new GI.

Can you do this diet without a diagnosis?  Yes.  While I was formally diagnosed four years ago, my hubby went gluten free 16 years ago per the poor advice of two medical doctors.  He refuses to do a challenge now because we know that gluten makes him sick.  So, he is just as careful as I am.  

Consider getting another family member tested who may have celiac symptoms.  This is a genetic related disease.  

The pill camera can catch celiac disease, but not always because villi are microscopic.  I imagine it mostly catches severe damage that affects the actual structure of the small intestine.   At least you might have ruled out Crohn's.  The GI might have missed areas if damaged.  The small intestine is a very long tube and if stretched out larger than a tennis court!  Get all copies of your test results from your doctor.  You need to keep advocating and having those records in your possession is priceless. 

Take care.  

Cyclinglady,

     First of all - thank you SINCERELY for your thorough & kind response. I apologize it's taken me quite some time to generate my own response, however, I've just been busy with work.

 

     As I've mentioned in an above response to another's post, I currently do not maintain a "Celiac" kitchen space. For example, my family shares a toaster, condiments, cutting boards, knives, other appliances, etc - you can assume the rest of the picture. I am also the only person in my household who eats a gluten free diet. Furthermore, on the rare occasion I dine out, which I hate doing because I have IBS & seem to ALWAYSSSS "pay for it" for the next few days afterward, I do occasionally consume foods that would have potential to share a fryer (fries), and be subject to cross contamination. I also do not dine exclusively at strictly gluten free restaurants with certified gluten free cooking preparation methods. Though, if a location offers gluten free "options" I'm not sure how imperative a strictly gluten free restaurant is, though I know Celiac varies in severity & I guess it could be I'm one of those "hyper-sensitive" individuals if I do indeed have the disease.

     Anyway, in regards to the "gluten challenge" to have results appear in testing.. how long does one have to consume gluten products for? I'm in a place now where my insurance is almost fully covered, and I'd seriously consider doing yet another upper endoscopy (I had my first performed in March of this year, which only evidenced Gastritis of the stomach and duodenum) but I want to make sure I'd do this "right" if I so chose to. I'm already going to see a Rheumatologist in a few weeks time (been waiting over three months time) because of concluding issues. I feel that my problems have only grown increasingly worse in the last few months & I worry this "trend" will only continue if I don't pursue an answer.

     Does anyone on this thread maintain experience with reintroducing gluten just to be re-tested for Celiac? I've heard the endoscopy is gold standard, and that blood tests aren't always conclusive, nor are they accurate. Can anyone confirm, please?

 

 

[caitlynmariah]

On 9/22/2017 at 4:11 PM, ironictruth said:

 I had a pillcam done two and a half months after I went gluten-free and it only showed gastropathy.  three and a half months before the pillcam and endoscopy showed damage consistent with celiac.  That damage was after a 10 or 11 week gluten challenge.

 prior to that I was gluten-free for a number of month, though probably not  cautious enough. endoscopy during that time showed only inflammation.

 prior to the above, I was gluten-free after some mild positive blood work and went on a six-week gluten Challenge and my biopsy was absolutely perfect. 

 my third endoscopy was initially reAd to show an increase in a certain cell only and then went on, upon further inspection by the specialist, to show damage consistent with celiac.

 it was the continued issues after to endoscopIes  that finally made me resume eating gluten for a longer  time and going to see a Celiac specialist out of state.

 it's been over three months and I'm still having symptoms.

Pieces of your story sound harrowingly familiar. Please let me extend my heartfelt empathy that you still have symptoms - if anyone knows what that feels like, it's me.

     When you were tested for Celiac, did you have to blatantly ask that your biopsies be sampled and examined for this disease? Prior to my upper endo, my GI doctor speculated I had Celiac that hadn't yet been fully "caught"... I said I've been maintaining a gluten-free diet for almost three years, and he said if I was still having problems it meant my test results would surely reflect that. Well, they didn't. And I'm still having problems.

  I just recently found out, after mulling over my biopsy results for the hundredth time, that it appears as though my (six) biopsies were only tested for H. pylori.. nowhere on the pathology does the word "Celiac" appear. Hmm, strange? I think so.

     Also, strangely enough, my GI doctor showed me gross images of a random patient's pillcam results who indeed had Celiac. The slides showed distinctive villi & my doctor informed me that if I had Celiac, this is exactly what my pillcam recording would find (I had the computer with me that day, and could monitor the gross (literally & figuratively) images as the pill moved through my digestive system.

 

[caitlynmariah]

On 9/22/2017 at 6:49 PM, squirmingitch said:

When the doc did the endoscopy, did he take biopsies? How many? From what locations? Get your records!!!! If he didn't take biopsies for celiac disease then he can NOT say you don't have it. 99% of the time, villi damage can not be SEEN by the GI doc during the endoscopy. And yes, the doc has no clue when saying it doesn't matter that you were gluten free for 3 years!

     The upper endo had him taking six biopsies & my colonscopy was only biopsied three times, and ONLY my colon was biopsied.. NOT my terminal ileum (the portion he could scope, anyway), which I had basically requested because I thought I had Crohn's. He was under the impression I had Colitis, even microscopic, which suggests why he only took samples from my colon. Still royally pissed off at this fact! 

     Luckily, I had both done at different hospitals but that both have patient online portals wherein I can obtain my results. Prior to me having my upper endo procedure, my GI speculated I had Celiac that hadn't yet been "caught", although I told him I had been gluten free for almost 3 years prior to testing. He stated that if I was STILL having symptoms, my test results would absolutely be reflective of this. Well, obviously they weren't. And here I am, still symptomatic. 

     In reading over my results, the pathology states I was only tested for H, pylori & that only evidence of Gastritis was found in my stomach & duodenum. NOWHERE on that pathological report is the word "Celiac" mentioned. Does this suggest I wasn't even tested for it??? I feel like he was "testing" me only through gross observation & with his naked eye!!!!

 

  

[caitlynmariah]

On 9/23/2017 at 8:13 AM, Noobette said:

The beginning of your story sounds very much like mine. I stopped eating gluten regularly when I adopted a mostly paleo diet years ago (bonus: my lifelong canker sores disappeared!). When I got 23andme testing done and learned I have both high-risk celiac genes, I stopped eating gluten altogether, thinking I couldn't trigger celiac if I didn't have gluten exposure. But, since I didn't have a celiac diagnosis or symptoms, I wasn't careful about cross-contamination. 

Then I got sick. My symptoms were vague: bloating, food sitting like a rock in my stomach after eating, exercise intolerance, weight loss, chest tightness. I had a bunch of tests, tried omeprazole, and eventually had an endoscopy. Because I hadn't eaten gluten in a year, I didn't expect any results suggesting celiac, but sure enough, my biopsies came back as Marsh 1: inconclusive, but all the other reasons to cause this result had already been ruled out or were very unlikely. I then had bloodwork for celiac, which was negative, as expected for anyone on a gluten-free diet. At this point I was sent to a gastroenterologist, who said she could not definitively diagnose me with celiac, and that my options were either to assume I have celiac and live like a celiac, or to do the full 12-week gluten challenge and then repeat all the testing.

i didn't want to take the risk of triggering another autoimmune disease by doing the gluten challenge, so I cleaned up my kitchen, replaced my cutting boards, cast iron pans, and anything plastic or silicone, and confined gluten to one corner of the counter. I started being the annoying person at restaurants and potlucks asking a thousand questions. And my symptoms went away.

i still don't know whether I have celiac. I struggle with the restrictions it places on my life outside of my home (travel, social life). Periodically I wonder whether I shoukd just do the gluten challenge so I know. But I'm afraid of the possible risks.

Your allergist did you a great disservice my telling you to go on a gluten-free diet without testing you for celiac. But that ship has sailed. At this point I would say your choices are the same as mine: either do a complete 12-week gluten challenge and then retest, or decide to live as if you had a firm celiac diagnosis. It can be a tough decision. Good luck and I hope you figure it out and get better very soon!

 

Hi & thank you for your reply!

    Ironically, our stories do sound strikingly familiar! I'm sorry you have to ride this struggle bus also - I know how much it can suck!! 

     Unfortunately, I am in the process of heavily considering doing the gluten challenge because I've already sustained further damage from whatever disease or illness it is that I have going on. I'm already scheduled to see a Rheumatologist for a potential autoimmune disease diagnosis.. and I know how AI diseases are highly comorbid. My grandmother has fibromyalgia & it's speculated I do as well, which I know that illness can be highly indicative of Celiac as well. 

   Are there any resources (I.e. Websites) you know of that go into detail in discussing the gluten challenge? It's a really difficult decision with a full-time work schedule, and the fear of being and feeling sick for a long time.

[ravenwoodglass]

1 hour ago, caitlynmariah said:

   Are there any resources (I.e. Websites) you know of that go into detail in discussing the gluten challenge? It's a really difficult decision with a full-time work schedule, and the fear of being and feeling sick for a long time.

You are in one of the best places there is to ask any questions you need about a gluten challenge. You might find it helpful to do a new topic to get input from those of us who have gone through it.

[cyclinglady]

Getting the family ready for school....but here is some information regarding a challenge:

Open Original Shared Link

Open Original Shared Link

Some experts recommend a shorter challenge, but I would do the longest to reduce the risk of being mis-diagnosed.  

[ironictruth]

So....somewhere your pathology slides are in storage. You can seek a second opinion and have the slides sent to be read. Mine were sent from Upstate NY to Boston and back. 

I also said to heck with it and did a gluten challenge. They said 3 months. I was so used to feeling poorly that it really was not any worse for me.