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Egd Tomorrow

bjn12670

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bjn12670 Rookie
bjn12670
Posted

Celiac Disease is a new discovery for me. I have read the forum at length and I feel like I am at the minority. My possible celiac disease was discovered after a got a stress fracture in my pelvic bone. The sports doctor told me this is a common injury in long distance runners, but he still requested I get a DEXA scan. My scan came back with mild bone loss. This prompted by doctor to do some blood work. This is where the suspician of celiac disease came from. My TTG/IIg tests showed positive for celiac. Actually, my doctor is quite positive that I have celiac. I was told that a normal reading for these antibodies is under 20. My results were over 250????? Anyways, I don't feel terrible. I have had constipation issues since my daughter was born in 2004 and I am often bloated and gasy.

Anyways, do my numbers make sense to anyone? I have my EGD tomorrow afternoon. Does anyone have any insight to the procedure? I am nervous about the tube going down my throat. Do you get any immediate feedback from the docters? How long does it take for the lab work?

I am so tired of thinking "celiac" and I just want some answers. My doctor keeps saying this is just a formality and he is positive I have celiac.

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jerseyangel Proficient
jerseyangel
Posted

Hi and welcome :)

I tend to agree with your doctor. The EGD is nothing to worry about--I've had 2. For both, I was asleep and remembered nothing of the procedure. After the second, I had a minor sore throat for a day or two after, but that was it.

Sometimes, the doctor can see changes in the mucosa that would be consistant with Celiac--but you need to wait for the pathology report because the damage is microscopic. All labs operate on a different timetable, but the wait is roughly a week or so.

Good luck and be sure to let us know what we can do to help!

bjn12670 Rookie
bjn12670
Posted
  • Author

Wow! This is my first forum ever! I didn't expect a response.

Thank you!

I will let you know what I find out.

SGWhiskers Collaborator
SGWhiskers
Posted

bjn,

I hope you are recovering well after your EGD today. I remember feeling a little funky for a day or two. Even if the biopsy does not show anything, continue to do some research on this forum and others. Most would agree that Celiacs need to avoid gluten even if there is no villi damage yet. (YET being the key). I've only been here 9 weeks, but these folks are great and very knowledgable! They back up their stuff with research articles.

SGWhiskers

bjn12670 Rookie
bjn12670
Posted
  • Author

It's official! I am a newly diagnosed celiac! I went grocery shopping today and was totally depressed! I know it will get easier, but I am overwhelmed right now.

Thanks for your kind words. I will be in touch often!

Lisa Mentor
Lisa
Posted

Welcome! If we can be of any help, let us know. ;)

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      Celiac or Addison's complications? Can someone share their experience?

      By trents · Posted

      @KRipple, thank you for the lab results from your husband's celiac disease blood antibody testing. The lab result you share would seem to be the tTG-IGA (Tissue Transglutaminase IGA) and the test result is in excess of 10x normal. This is significant as there is an increasing tendency for physicians to grant a celiac disease diagnosis on the basis of antibody testing alone when the scores on that particular test exceed 10x normal. This trend started in the UK during the COVID pandemic when there was tremendous pressure on the medical system over there and it has spread to the USA. The tTG-IGA is the centerpiece of celiac disease blood antibody testing. All this to say that some doctors would grant a celiac disease diagnosis on your husband's bloodwork alone and not feel a need to go forward with an endoscopy with biopsy. This is something you and your husband might wish to take up with his physicians. In view of his many health issues it might be wise to avoid any further damage to his small bowel lining by the continuing consumption of gluten and also to allow healing of such to progress. The lining of the small bowel is the place where essentially all of our nutrition is absorbed. This is why celiac disease when it is not addressed with a gluten free diet for many years typically results in additional health problems that are tied to nutritional deficiencies. The millions and millions of tiny finger-like projections that make up the nutrient absorbing surface of the small bowel lining are worn down by the constant inflammation from gluten consumption. In celiac disease, the immune system has been tricked into labeling gluten as an invader. As these finger-like projections are worn down, the efficiency of nutrient absorption becomes more and more compromised.
    • KRipple
      Celiac or Addison's complications? Can someone share their experience?

      By KRipple · Posted

      Thank you so much! And sorry for not responding sooner. I've been scouring the hospital records and can find nothing other than the following results (no lab info provided): Component Transglutaminase IgA   Normal Range: 0 - 15.0 U/mL >250.0 U/mL High   We live in Olympia, WA and I will be calling University of Washington Hospital - Roosevelt in Seattle first thing tomorrow. They seem to be the most knowledgeable about complex endocrine issues like APS 2 (and perhaps the dynamics of how APS 2 and Celiacs can affect each other). His diarrhea has not abated even without eating gluten, but that could be a presentation of either Celiac's or Addison's. So complicated. We don't have a date for endoscopy yet. I will let my husband know about resuming gluten.    Again, thank you so much for sharing your knowledge with me!
    • trents
      Celiac or Addison's complications? Can someone share their experience?

      By trents · Posted

      Scott makes a good point about the prednisone. It has a general suppressing effect on the immune system. Don't misunderstand me. In view of your husband's several autoimmune afflictions, it would seem to be an appropriate medication therapy but it will likely invalidate endoscopy/biopsy test results for celiac disease.
    • Scott Adams
      Celiac or Addison's complications? Can someone share their experience?

      By Scott Adams · Posted

      I also want to mention that using prednisone would likely also make the endoscopy results invalid. This steroid will cause gut healing and could mask the damage caused by celiac disease. 
    • Jess270
      Bitters for digestion?

      By Jess270 · Posted

      This sounds to me like histamine intolerance. Some foods have more or less histamine. processed or aged meats, fermented food like yoghurt or kimchi and bread (yeast), spinach, eggplant and mushroom are high in histamine. Other foods like tomatoes are histamine liberators, they encourage your mast cells to release histamine, which can also trigger the reactions you describe, flu like symptoms, joint pain, urinary tract irritation, rash, stomach upset, nausea, diarrhoea & fatigue. I had liver pain like you describe, as part of the intolerance is usually a sluggish liver that makes processing all the histamine difficult. There are multiple possible root causes of histamine intolerance, usually it’s a symptom of something else. In my case, leaky gut (damaged gut wall)caused by undiagnosed celiac, but for others it’s leaky gut caused by other things like dysbiosis. Some people also experience histamine intolerance due to mould exposure or low levels of DAO (the enzyme that breaks down histamine in the gut). I’d try a low histamine diet & if that doesn’t improve symptoms fully, try low oxalate too. As others have suggested, supplements like vitamin d, b, l-glutamine to support a healthy gut & a good liver support supplement too. If you’re in a histamine flare take vitamin c to bowel tolerance & your symptoms will calm down (avoid if you find you have oxalate intolerance though). Best of luck 
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