Could I possibly have Celiacs?

[hayleedee]

Hello all, 

I am very new to this group. I thought it was the perfect place to ask some questions regarding symptoms I have been experiencing. 

For basically my whole life I have always had "stomach issues". I always kind of related it to the fact that I refused to use public restrooms, or maybe it had something to do with my anxiety; "nervous belly". Now that I am an adult I have taken a little more caution to figuring out the things I am now SEVIERLY experiencing.  

I am miserable. For the past year I have been enduring either constant chronic constipation or diarrhea. I honestly cannot remember the last time I had a normal bowel movement. I am always so uncomfortably bloated, to the point where I have a hard time just sitting, it almost takes my breath away. I have been passing gas more frequently that I ever have before. I am always tired or feeling out of energy. Some times I feel so bloated and backed up that I cannot eat because it hurts so bad, and if I do eat I feel like I need to throw up to relieve the pain and discomfort - almost like my food is just sitting in my chest? Also, not sure if it is related but I have noticed that my urine is very foul smelling, almost a toxic or chemically type smell, as well as dark/cloudy. I drink LOTS of water daily, so I don't think I am dehydrated. I have been recently getting hemorrhoid's due to my constipation and straining that causes bleeding which freaks me out. I read somewhere that a common symptom of celiacs is anemia, and though I have never been diagnosed I notice that I bruise very easily and it has always been kind of a concern. I carry around laxatives/ stool softeners in my purse, I basically eat them like skittles trying to relieve my constipation as well as taking quad doses of MiraLax multiple days a week with no relief or results. Nothing. Is. Working.  I finally made an appointment with a GI Specialist and she mentioned that all of my symptoms sounded like Celiacs  and had me do a blood test to confirm. I am waiting for my test results, I should get them today or tomorrow. She also has me scheduled for a colonoscopy next week to check for Diverticulitis, Chrons, and the dreaded C***** word. I am only 22 years old and I am freaking out. Can someone please give me some advice or encouragement with my situation? I don't know any one with celiacs nor did I even really know what it was up until about 6 days ago, so I am kind of lost in the dark when it comes to asking questions about my symptoms and what to do. Also, I know I should just wait to get my test results back before I begin assuming anything but with all of my symptoms it just makes the most sense? Something is obviously causing me to be so miserable; I just don't know what it is yet..     

Thanks for taking the time to read this, I hope someone can offer some kind of guidance or support.

Best, Haylee         

[trents]

Welcome to the forum, hayleedee!

Before I forget to mention it, you need to be aware that you should not attempt to eliminate gluten from your diet until all tests are complete.  In addition to the blood antibody tests you have recently had, your GI doc may want to do an endoscopy with biopsy to check for damage to the small bowel lining that celiac disease typically produces. Eliminating gluten from the diet before that scoping will invalidate the results. The colonoscopy you have scheduled would not check for that as it will only examine the lower parts of the intestine. I wonder if your GI doc could do both at the same time? If your bloodwork is positive for celiac disease, it would be something to ask about. The upper GI endoscopy/biopsy is considered the gold standard for diagnosing celiac disease. Hang in there and don't let your imagination get the best of your worrying about what could be.

[Scott Adams]

Welcome, and it sounds like you're on the right track by getting the blood screening for celiac disease. Please share the results with us when you get them.

Your symptoms could definitely be due to undiagnosed celiac disease, among other things. It sounds like your doctor is on the ball, and scheduling the various tests necessary to rule things in or out, so hang in there!

[Ennis-TX]

In addition to the above advice, I dealt with the constipation issue for years in the past. Was a bit weird since normal and even large doses of ex lax and miralax did nothing for it aside from a normal bowel movement (Think like the hole 8oz container of miralax for this). I found I had to use magnesium citrate or carbonate to get regular BMs years ago, and had to use large does of the Magnesium Citrate laxative (2 bottles equate magnesium citrate laxitive with the large amount of liquid they said to use with stool softeners)  to clean out for prep for scopes since the miralax and stool softeners did not clear me out for the scopes. Might try it if you have issues with their scope prep suggestions.

Edited February 17, 2021 by Ennis_TX

[hayleedee]

  On 2/16/2021 at 9:15 PM, trents said:

Welcome to the forum, hayleedee!

Before I forget to mention it, you need to be aware that you should not attempt to eliminate gluten from your diet until all tests are complete.  In addition to the blood antibody tests you have recently had, your GI doc may want to do an endoscopy with biopsy to check for damage to the small bowel lining that celiac disease typically produces. Eliminating gluten from the diet before that scoping will invalidate the results. The colonoscopy you have scheduled would not check for that as it will only examine the lower parts of the intestine. I wonder if your GI doc could do both at the same time? If your bloodwork is positive for celiac disease, it would be something to ask about. The upper GI endoscopy/biopsy is considered the gold standard for diagnosing celiac disease. Hang in there and don't let your imagination get the best of your worrying about what could be.

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Trents, 

Thank you for your response. I got my blood work back yesterday and they said It was negative for celiac. Which I am honestly so confused about.. Would it be worth asking about an edoscopy still with negative results? I really just want to get this figured out and at this point I am willing to try anything. Internet research is not helping either, it actually may be making things worse, LOL. 

[hayleedee]

  On 2/16/2021 at 11:21 PM, Scott Adams said:

Welcome, and it sounds like you're on the right track by getting the blood screening for celiac disease. Please share the results with us when you get them.

Your symptoms could definitely be due to undiagnosed celiac disease, among other things. It sounds like your doctor is on the ball, and scheduling the various tests necessary to rule things in or out, so hang in there!

Expand Quote  

Scott, 

Thanks for your reply! I got my blood work results back yesterday, they informed me that it came back negative for celiac disease. I asked her if she could give me the result numbers and she did over the phone but I hardly understood anything she was saying.. hoping to have a better understanding of what is causing my issues after my colonoscopy. Praying for nothing to serious! 

[hayleedee]

  On 2/17/2021 at 9:02 PM, Ennis_TX said:

In addition to the above advice, I dealt with the constipation issue for years in the past. Was a bit weird since normal and even large doses of ex lax and miralax did nothing for it aside from a normal bowel movement (Think like the hole 8oz container of miralax for this). I found I had to use magnesium citrate or carbonate to get regular BMs years ago, and had to use large does of the Magnesium Citrate laxative (2 bottles equate magnesium citrate laxitive with the large amount of liquid they said to use with stool softeners)  to clean out for prep for scopes since the miralax and stool softeners did not clear me out for the scopes. Might try it if you have issues with their scope prep suggestions.

Expand Quote  

Hello! Thanks for your reply.

Constipation is the WORST. I rarely have any luck with laxatives and stool softeners so when I was being scheduled for my scope I did let them know that. They suggested a two day clear out rather than the usual one day. Reading through the packet it looks like its an entire bottle of MiraLax with 36oz fluid accompanied with magnesium citrate (I have never tried this before), and 5 capsules of another OTC lax that I could not pronounce or remember the name of off the top of my head right now. Sounds like it may be what they suggested to you as well! I am hoping it all goes smoothly. I just know I am in for a rough next couple of days, LOL. 

Thanks for the suggestion! 

[Scott Adams]

  On 2/17/2021 at 9:15 PM, hayleedee_ said:

Scott, 

Thanks for your reply! I got my blood work results back yesterday, they informed me that it came back negative for celiac disease. I asked her if she could give me the result numbers and she did over the phone but I hardly understood anything she was saying.. hoping to have a better understanding of what is causing my issues after my colonoscopy. Praying for nothing to serious! 

Expand Quote  

I think it would be a good idea to get a paper copy of your test results, and share them if you can. Sometimes "negative" isn't so negative, if you know what I mean. People with celiac disease are around 1% of the population, but those with gluten sensitivity are around ~10%, and there currently no test available for non-celiac gluten sensitivity (but some people do have elevated gluten antibody tests, just not high enough to call it celiac disease).

[Inshirah]

  On 2/17/2021 at 10:29 PM, Scott Adams said:

I think it would be a good idea to get a paper copy of your test results, and share them if you can. Sometimes "negative" isn't so negative, if you know what I mean. People with celiac disease are around 1% of the population, but those with gluten sensitivity are around ~10%, and there currently no test available for non-celiac gluten sensitivity (but some people do have elevated gluten antibody tests, just not high enough to call it celiac disease).

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Hi, I agree. I just had a full food intolerance blood test and discovered gluten to be a very high sensitivity. I have struggled with lots of different symptoms not understanding what was the cause. Maybe look into getting this test, as the above mentioned it may not be celiac but a gluten intolerance can have a large impact. And bonus you'll discover anything else that you might have not considered. 

[trents]

Inshirah, what kind of test did you have to check for food intolerances? Was this a blood test or a skin prick test or something else?

[Scott Adams]

  On 2/18/2021 at 8:45 AM, Inshirah said:

Hi, I agree. I just had a full food intolerance blood test and discovered gluten to be a very high sensitivity. I have struggled with lots of different symptoms not understanding what was the cause. Maybe look into getting this test, as the above mentioned it may not be celiac but a gluten intolerance can have a large impact. And bonus you'll discover anything else that you might have not considered. 

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I just had an ALCAT test done and will be doing an article about this. I have not yet received my results. I will be asking questions to the company owner about their gluten sensitivity testing, as well as their other tests. 

[Inshirah]

  On 2/18/2021 at 3:29 PM, trents said:

Inshirah, what kind of test did you have to check for food intolerances? Was this a blood test or a skin prick test or something else?

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Hi, I had a blood test done. Checked over 216 foods and gluten was one of my strong intolerances. 

[trents]

  On 2/18/2021 at 7:05 PM, Inshirah said:

Hi, I had a blood test done. Checked over 216 foods and gluten was one of my strong intolerances. 

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A word of caution is in order here. Don't take those allergy/intolerance blood tests (or the skin prick tests) too seriously. They are notoriously unhelpful when it comes to being definitive with regard to what foods actually give you issues. There is often poor correlation there. There are problems in several areas when it comes to those kind of tests. I won't go into the reasons for it but one tell tale reality is that if you send the same blood sample to different testing labs you would likely get significantly different results. As always, compare the results with your own symptomatic experience. I suggest you do some research on the reliability of serum allergy/intolerance testing.

Edited February 18, 2021 by trents

[hayleedee]

  On 2/17/2021 at 10:29 PM, Scott Adams said:

I think it would be a good idea to get a paper copy of your test results, and share them if you can. Sometimes "negative" isn't so negative, if you know what I mean. People with celiac disease are around 1% of the population, but those with gluten sensitivity are around ~10%, and there currently no test available for non-celiac gluten sensitivity (but some people do have elevated gluten antibody tests, just not high enough to call it celiac disease).

Expand Quote  

I will request a print out at my next appointment and get back to you! I just talked to the DR preforming my colonoscopy and he is going to do an endoscopy/biopsy while I am there as well. So hopefully they will figure it out one way or another. (literally) 

[Inshirah]

  On 2/18/2021 at 8:54 PM, trents said:

A word of caution is in order here. Don't take those allergy/intolerance blood tests (or the skin prick tests) too seriously. They are notoriously unhelpful when it comes to being definitive with regard to what foods actually give you issues. There is often poor correlation there. There are problems in several areas when it comes to those kind of tests. I won't go into the reasons for it but one tell tale reality is that if you send the same blood sample to different testing labs you would likely get significantly different results. As always, compare the results with your own symptomatic experience. I suggest you do some research on the reliability of serum allergy/intolerance testing.

Expand Quote  

Thank you, I am aware. This test was done in addition to other methods of investigation, testing, research, and medical consultation...I think most people spend years trying to find the culprit to many symptoms they are having, sometimes alone due to the unreliability of some medical diagnosing... This test actually provided additional clarity for me as my toddlers pediatrician has also diagnosed potential celiac... And there is often a genetic clustering of the disease. I would say there is maybe not enough research to conclusively say one way or the other if it is reliable, however it could be very helpful in relation to other tests etc. 

[pokey449]

  On 2/16/2021 at 7:39 PM, hayleedee_ said:

Hello all, 

I am very new to this group. I thought it was the perfect place to ask some questions regarding symptoms I have been experiencing. 

For basically my whole life I have always had "stomach issues". I always kind of related it to the fact that I refused to use public restrooms, or maybe it had something to do with my anxiety; "nervous belly". Now that I am an adult I have taken a little more caution to figuring out the things I am now SEVIERLY experiencing.  

I am miserable. For the past year I have been enduring either constant chronic constipation or diarrhea. I honestly cannot remember the last time I had a normal bowel movement. I am always so uncomfortably bloated, to the point where I have a hard time just sitting, it almost takes my breath away. I have been passing gas more frequently that I ever have before. I am always tired or feeling out of energy. Some times I feel so bloated and backed up that I cannot eat because it hurts so bad, and if I do eat I feel like I need to throw up to relieve the pain and discomfort - almost like my food is just sitting in my chest? Also, not sure if it is related but I have noticed that my urine is very foul smelling, almost a toxic or chemically type smell, as well as dark/cloudy. I drink LOTS of water daily, so I don't think I am dehydrated. I have been recently getting hemorrhoid's due to my constipation and straining that causes bleeding which freaks me out. I read somewhere that a common symptom of celiacs is anemia, and though I have never been diagnosed I notice that I bruise very easily and it has always been kind of a concern. I carry around laxatives/ stool softeners in my purse, I basically eat them like skittles trying to relieve my constipation as well as taking quad doses of MiraLax multiple days a week with no relief or results. Nothing. Is. Working.  I finally made an appointment with a GI Specialist and she mentioned that all of my symptoms sounded like Celiacs  and had me do a blood test to confirm. I am waiting for my test results, I should get them today or tomorrow. She also has me scheduled for a colonoscopy next week to check for Diverticulitis, Chrons, and the dreaded C***** word. I am only 22 years old and I am freaking out. Can someone please give me some advice or encouragement with my situation? I don't know any one with celiacs nor did I even really know what it was up until about 6 days ago, so I am kind of lost in the dark when it comes to asking questions about my symptoms and what to do. Also, I know I should just wait to get my test results back before I begin assuming anything but with all of my symptoms it just makes the most sense? Something is obviously causing me to be so miserable; I just don't know what it is yet..     

Thanks for taking the time to read this, I hope someone can offer some kind of guidance or support.

Best, Haylee         

Expand Quote  

Haylee: Have you been tested for SIBO as well. SIBO = small intestinal bacteria overgrowth. You sxs sound very much like what I was experiencing. I did the breath test for SIBO in July and I had it big time. I think I had had it for some time, but just attributed it to being overly gassy with an irritable GI track. However after being treated for SIBO I keep having sxs and they are now trying to figure out if I am celiac. Ugghhh!!!  So many GI sxs are the same for various conditions. While you are talking with your GI doc about celiac etc Id suggest you ask about being tested for SIBO as well. I can personally appreciate the misery you are experiencing. Wishing you good luck