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Could Use Some Prompt Advice/thoughts

mhb

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mhb Apprentice
mhb
Posted

Been off gluten and dairy since June (plus soy, beans, eggplant and potatoes). Bloating and constipation vastly improved, periods now regular and acne all but gone. Using Florajen 3 about three weeks now. Digestion even better. Ditto tryptophan for sleep. Sometime in last 4 weeks or so I started "silent" GERD (no pain or heartburn - just like a bubble of acid or food in upper esophagus, sometimes worse than others - just at the annoyance level). I've never had this. I have a high deductible plan and have used the deductible this year, so I have a window to do an upper GI for this, but isn't it premature, or can visible GERD-related damage have occurred already? I never had the celiac test, but I've been gluten-free for 5 mo. now. On the other hand I could have it done simultaneously for the heck of it. I leave town 12/17 for the month, so really have a tight window to request an upper endo and get in their schedule if they can fit me. Still, hate to do it if not likely to show anything. Can anyone help me think this through?

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ravenwoodglass Mentor
ravenwoodglass
Posted

If you have been gluten-free since June then the endo will be useless for diagnostic purposes as far as celiac goes. You really should have had it before you went gluten free. Were you diagnosed by a positive celiac panel? If you were a rerunning of the panel may tell you how you are doing on the diet and healing. There is no reason not to have an endo to look for other issues but for celiac diagnosis it is too late without at least a 3 month gluten challenge.

dizzygrinch Enthusiast
dizzygrinch
Posted

hello, that i would say something as well. I am not diagnosed yet, but do feel a lot better, being gluten free for a couple of months now. Do I understand correctly, you still have GERD? my GERD has improved, but I still have symptoms. I have noticed, that for me, ANY citrus, oranges, tangerines, anything, will increase my heartburn. I cant do any soda, nothing bubbly. NO juice, no seasonings, especially pepper. Tons of things will bring on the heartburn and GERD symptoms, I even had a endoscopy last year, that showed evidence of "healed peptic ulcer disease" whatever that means, so I just have to watch everything I put in my mouth. I would to the endoscopy too, however, just to rule out any other problems...

mhb Apprentice
mhb
Posted
  • Author
hello, that i would say something as well. I am not diagnosed yet, but do feel a lot better, being gluten free for a couple of months now. Do I understand correctly, you still have GERD? my GERD has improved, but I still have symptoms. I have noticed, that for me, ANY citrus, oranges, tangerines, anything, will increase my heartburn. I cant do any soda, nothing bubbly. NO juice, no seasonings, especially pepper. Tons of things will bring on the heartburn and GERD symptoms, I even had a endoscopy last year, that showed evidence of "healed peptic ulcer disease" whatever that means, so I just have to watch everything I put in my mouth. I would to the endoscopy too, however, just to rule out any other problems...

I never had the GERd until recently, long after removing gluten. It's mild. I noticed it right after swallowing a gelcap pill this morning, and it seemed to come back after reading your post and thinking about it! ;-)

ravenwoodglass Mentor
ravenwoodglass
Posted
I never had the GERd until recently, long after removing gluten. It's mild. I noticed it right after swallowing a gelcap pill this morning, and it seemed to come back after reading your post and thinking about it! ;-)

What was in that gelcap? It may be something your body doesn't like or if you didn't drink enough water, a full 8 oz glass is ideal to help the pill get all the way to the stomach, it may have been irritating. If you didn't drink enough when you took it it may have dissolved before it was supposed to.

mhb Apprentice
mhb
Posted
  • Author
What was in that gelcap? It may be something your body doesn't like or if you didn't drink enough water, a full 8 oz glass is ideal to help the pill get all the way to the stomach, it may have been irritating. If you didn't drink enough when you took it it may have dissolved before it was supposed to.

This may be it. This morning when I noticed an immediate reaction I downed about 10 oz of water. I'll keep working this hypothesis and see what happens. meanwhile, see the 11/15/08 article on this site titled "'Atypical' GI Symptoms on the Rise Among Gluten-Free Celiac Patients":

"The team noted that the gastrointestinal symptoms experienced by group I differed from those present at the time of their celiac disease diagnosis. 6 patients from group I experienced anemia/diarrhea/weight loss, while ***12 experienced symptoms similar to gastroesophageal reflux disease***, and 24 patients experienced abdominal pain and/or constipation."

https://www.celiac.com/articles/21688/1/Aty...ents/Page1.html

mhb Apprentice
mhb
Posted
  • Author
What was in that gelcap?

Oh ya, 15 billion probiotics (Floragen 3). They don't say drink with water but I will now and see if that helps.

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    • trents
      celiac, chocolate and alcohol

      By trents · Posted

      So, you had both and endoscopy with biopsy and a colonoscopy. That helps me understand what you were trying to communicate. No, no! It never occurred to me that you were trying to mislead me. It's just that we get a lot of posters on the forum who are misinformed about what celiac disease is and how it is diagnosed so I need some clarification from you which you were so gracious to give.
    • barb simkin
      celiac, chocolate and alcohol

      By barb simkin · Posted

      I had both the genetic genes for celiac.  My gastroenologist advised he also took a biopsy during one of my colonoscopies and endoscopy and advised I had celiac disease, along with stomach ulcers from my esophagus stomach down to my small bowel. I was shown the ulcers on the catscan and endoscopy report.  I also had polyps in 3 places throughout my large bowel. I was on a strict diet for months following.  I am sorry if I didnt define how I was diagnosed with celiac disease.  I am sorry if you think I was misleading you. I also had to pay $150.00 for the genetic testing.
    • trents
      celiac, chocolate and alcohol

      By trents · Posted

      So, I'm a little confused here. I understand you to say that you have not been officially diagnosed with celiac disease. Is this correct?  You have had genetic testing done to check for the potential for developing celiac disease and that was positive. Is this correct? I think you meant to type "gluten sensitivity" but you typed "gluten insensitivity". Just so we are clear about the terminology, there is celiac disease and there is NCGS (Non Celiac Gluten Sensitivity). They are not the same but they have overlapping symptoms. Celiac disease causes damage to the small bowel lining but NCGS does not. NCGS is often referred to in short form as gluten sensitivity. However, people often use the terms celiac disease and gluten sensitivity interchangeably so it can be unclear which disease they are referring to. Genetic testing cannot be used to diagnose celiac disease but it can be used to establish the potential to develop active celiac disease. About 40% of the general population has one or both of  the genes that have been most strongly connected with the potential to develop active celiac disease but only about 1% of the population actually develops active celiac disease. This makes the genetic test useful for ruling out celiac disease but not for diagnosing it. A colonoscopy cannot be used to diagnose celiac disease because it doesn't permit the scope to go up into the small bowel where celiac disease does the damage. They use an endoscopy ("upper GI) for checking the small bowel lining for celiac damage.
    • barb simkin
      celiac, chocolate and alcohol

      By barb simkin · Posted

      I did nor read the chocolate pkg as it was of fered to me and I ate 2 pcs. I do know that only very dark chocolate and and a very few others are gluten free. Most alcohols contain gluten. I have several yrs of not knowing my celiac condition as docs would not do the test. After looking on the internet about my sufferings I insisted on the gene trsting which showed positive for gluten insensitivity and a biopsy on my next colonoscopy that also showed positive which could not help the damage done to my small bowel. So I very rarely have a glass of wine
    • trents
      celiac, chocolate and alcohol

      By trents · Posted

      @barb simkin, are you sure the chocolate products are gluten-free and not "manufactured on equipment that also handles wheat products and tree nuts", i.e., cross-contamination? And what kind of alcoholic beverages are we talking about? Most beers are made from gluten-containing grains. Just checking.
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