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HydraWoman

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HydraWoman Rookie
HydraWoman
Posted

I have had the blood test and it was negative but my regular doctor thinks I should see a GI doc and get an endoscopy and I am due for a colonoscopy. I will be calling the GI doc he referred me

to next week to make an appointment.

I take Bentyl for irritable bowel syndrome, which I was dx with after my last colonoscopy. I take 10mg four times per day. I also chew pepto bismol tablets several days a week. I have issues with very loose and frequent bowel movements....sorry to give the gory details and I am looking for answers lol.....I have abdominal cramping almost every day. I am overweight also but my sugar and other blood levels are good, except for high triglycerides.

Even if I do not have Celiac disease my family doctor thinks going gluten-free would be a good thing for me to do. I first heard about gluten-free diets when reading up on alternative mental health treatments. I have mental illness and take Lexapro and Lithium. I have read a lot lately that changing your diet to exclude gluten can improve your mental health.

I have been trying a variety of gluten-free products lately and I know I have a lot to learn. Any suggestions or advice for me would be much apprecited. Living with bipolar disorder is not easy but I function very well and I have been in treatment for several years. I am hopeful of the idea that changing my diet may improve my symptoms of ibs and bipolar. Thanks so much.

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ravenwoodglass Mentor
ravenwoodglass
Posted

You have a good GP who seems to up on all the systems that gluten can impact. After you are done with all the testing you choose to do give the diet a good strict try. Since your going for a colonoscopy having the endo done at the same time is a good thing to do. Try to get the test scheduled for as soon as you can and keep eating gluten until it is done. Gluten can have a negative impact on the brain and nervous system, my impact was severe, and it does take some time to heal. However for me being gluten free completely did away with my depressive symptoms. Those only reappear after a glutening and only last for 24 hours. Unfortunately the rest of my 'gotcha' symptoms take about 3 weeks to resolve.

If you put celiac and neurological into a search engine there will be a lot of info that backs up what your doctor has told you.

HydraWoman Rookie
HydraWoman
Posted
  • Author

Thanks. I will be seeing my regular physician on Monday, so he can do the referral to the GI doc. I want to try and get an endo and a colonoscopy together. From what I understand I should continue to eat gluten until I get the testing done. Really glad I found this forum. Lots of good information here.

HydraWoman Rookie
HydraWoman
Posted
  • Author

I will be having a colonoscopy and an endoscopy on September 4th and I am anxious to get these tests done and proceed from there. I am still eating gluten a few times per day but I have also purchased some gluten free products to try them and see what I like for future use. Wow, the expensive is amazing! It just frustrates me how it is so expensive to eat healthy but I think about the long run of feeling better and hopefully losing some weight. I will let everyone know what my results of the testing is and what my doctors and I think is the best plan of action.

I have had a colonoscopy before so I know what to expect but I have not had an endoscopy and I am a bit nervous about having that test but I know I need it right now.

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    • Lynnard
      Waiting on biopsy results but wanted opinion on bloodwork

      By Lynnard · Posted

      Thank you - that makes perfect sense and I understand. celiac disease is an autoimmune disease which will cause further damage while gluten sensitivity is different. Based on my symptoms and bloodwork, I am almost certain I have celiac disease.  I kind of hate to hope for a positive biopsy but a negative one would be frustrating for sure. Regardless, I have done a lot of research on gluten-free diet and am prepared to begin a new lifestyle journey - with a lot of questions along the way.  I appreciate your information and advice! 
    • trents
      Waiting on biopsy results but wanted opinion on bloodwork

      By trents · Posted

      Let's talk about terminology for the sake eliminating (as much as possible) confusion. Unfortunately, the terms "gluten sensitive" and "gluten intolerant" have, historically, been used indiscriminately. There are two primary categories of gluten disorders whose "official" terms are 1. celiac disease and 2. Non Celiac Gluten Sensitivity or NCGS for short.  I believe there is an evolution toward using the term "gluten intolerance" to refer to celiac disease and "gluten sensitive" to refer to NCGS. I say that because the words "gluten sensitivity" are actually found in the official medical term for the non celiac medical disorder involving gluten. Does that make sense? The difference between celiac disease and NCGS is that celiac disease causes inflammation in the small bowel lining and (over time) does damage to it so that it becomes inefficient in absorbing nutrients from what we eat. This is the area of the intestinal track where all of our nutrients are absorbed. Of course, this can lead to any number of other medical problems. NCGS, on the other hand, does not cause inflammation or damage to the lining of the small bowel and therefore does not produce the antibodies that celiac disease antibody tests look for. Neither will NCGS, therefore, produce a positive biopsy result. NCGS and celiac disease, however share many of the same symptoms in the area of GI distress and NCGS is 10x more common than celiac disease. There is, at the present time, no defining test for NCGS so an NCGS diagnosis is arrived at by first eliminating celiac disease for which we do have tests for. Having said that, some experts believe that NCGS can be a precursor to celiac disease.  Yes, you are correct in stating that both conditions require a gluten free diet.  So, in the absence of official testing for celiac disease (and official testing done under the proper conditions) a person who is experiencing distress when consuming gluten cannot be certain whether they are dealing with celiac disease or NCGS. Not to have an official diagnosis of celiac disease while actually having the condition makes it difficult for some folks to stay on the gluten free bandwagon. It's just the psychology of the situation and wanting to rationalize away a very inconvenient and socially isolating medical condition.
    • Lynnard
      Waiting on biopsy results but wanted opinion on bloodwork

      By Lynnard · Posted

      Thank you!  This is super helpful and confirms everything I have read. I was definitely eating lots of gluten before both testing and endoscopy. If the biopsies do come back negative, I'm wondering how conclusion/distinction is made between celiac and gluten intolerance is made.  Or does it matter because presumably recommendation of gluten-free diet will be the protocol??  
    • trents
      Weak positive blood test and marsh type 1

      By trents · Posted

      You are welcome! We frequently get similar comments. Knowledge about celiac disease in the medical community at large is, unfortunately, still significantly lacking. Sometimes docs give what are obviously bum steers or just fail to give any steering at all and leave their patients just hanging out there on a limb. GI docs seem to have better knowledge but typically fail to be helpful when it comes to things like assisting their patients in grasping how to get started on gluten free eating. The other thing that, to me at least, seems to be coming to the forefront are the "tweener" cases where someone seems to be on the cusp of developing celiac disease but kind of crossing back and forth over that line. Their testing is inconsistent and inconclusive and their symptoms may come and go. We like to think in definite categorical terms but real life isn't always that way.
    • Rogol72
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      By Rogol72 · Posted

      Hey @Morgan Tiernan, Sounds just like my experience. I was diagnosed with dermatitis herpetiformis over 10 years ago. It appeared suddenly as a very itchy rash which looked like Eczema. When a steroid cream didn't clear it up, my Dermatologist (who had come across it before) suspected dermatitis herpetiformis and performed a skin biopsy which came back positive for dermatitis herpetiformis. The important thing is to get a definitive diagnosis of dermatitis herpetiformis. What you've described sounds like classic dermatitis herpetiformis though. Hopefully, your Dermatologist has come across dermatitis herpetiformis before and performs the skin biopsy correctly as trents mentioned. I've had the blisters on the knees, hips, forearms/elbows or anywhere that pressure is applied to the skin ... from clothing or otherwise. They itch like nothing on earth, and yes salt from sweat or soaps/shower gels will irritate a lot. I've been on Dapsone and it is very very effective at eliminating the dermatitis herpetiformis itch, and improved my quality of life in the early stages of getting on top of dermatitis herpetiformis while I adjusted to the gluten-free diet. But it does have various side effects as trents said. It can effect the red blood cells, lowering hemoglobin and can cause anemia, and requires regular blood monitoring whilst on it. You would need to consider it carefully with your Dermatologist if you do have dermatitis herpetiformis. Here's a very informative webinar from Coeliac Canada discussing everything dermatitis herpetiformis related.  https://www.youtube.com/watch?v=PAdmsNiyfOw I've also found this recent interview with a Dermatologist about dermatitis herpetiformis to be educational.  https://www.youtube.com/watch?v=rZnLeKutgUY Keep the chin up and keep advocating for yourself for a proper diagnosis. Though it sounds like you're on top of that already. Are you in the UK or Ireland? I'm curious because your surname is Irish. 
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