Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):
  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Lost...


klink3r

Recommended Posts

klink3r Newbie

So I had a severe bout of diarrhea about a month and a half ago. After two years of on and off diarrhea and constipation (not to mention I lost 25 lbs with this particular bout), we went to the doctor, who ordered blood tests. They came back positive for celiac disease and I began a gluten free diet and scheduled a small bowel biopsy to make the diagnosis official. The gluten free diet did not seem to do much for me in the or three weeks before the biopsy. The week before the biopsy I went off the diet so that any damage to the small bowel could be seen. I did not seem to have any negative effects of eating gluten again. The doctor did both a small bowel biopsy and a colonoscopy. He told me afterwards that, just by looking, he did not see any signs of celiac, but we wouldn't know until the biopsy came back. He also scheduled me for a small bowel series the following week. When i went into the series, I was told by the radiologist that he could not see any blockages or signs of celiac either. Today, we got the results of new blood tests and the biopsies back.

1. The small bowel biopsy was clear.

2. The colonoscopy was clear.

3. A blood test for IBD and Crohns was positive.

Obviously I am at a loss. What else could a positive blood test for celiac mean? And if my colonoscopy was clear, how can i be positive for Crohn's disease?

I'm 18 years old, otherwise healthy. I don't exercise as much as i am told i should but I'm not morbidly overweight. The weightloss that came from the bout of diarrhea pushed me into the 'healthy' point of the BMI scale.

I leave for school six hours away in less than two weeks, so any advice or intel would be greatly appreciated. :)


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



tygwyn Newbie

From what I've read, one week back on Gluten just isnt enough. You shouldnt have been put on a gluten free diet if a biopsy was scheduled so soon after. This is a snippet from the Open Original Shared Link:

Do not commence a gluten free diet prior to being tested for coeliac disease. If a gluten free diet has been adopted, the tests used to diagnose coeliac disease will be unreliable, and may be falsely negative.

If gluten has been removed from the diet, a normal diet must be resumed for at least six weeks prior to testing. During this

nasalady Contributor
So I had a severe bout of diarrhea about a month and a half ago. After two years of on and off diarrhea and constipation (not to mention I lost 25 lbs with this particular bout), we went to the doctor, who ordered blood tests. They came back positive for celiac disease and I began a gluten free diet and scheduled a small bowel biopsy to make the diagnosis official. The gluten free diet did not seem to do much for me in the or three weeks before the biopsy. The week before the biopsy I went off the diet so that any damage to the small bowel could be seen. I did not seem to have any negative effects of eating gluten again. The doctor did both a small bowel biopsy and a colonoscopy. He told me afterwards that, just by looking, he did not see any signs of celiac, but we wouldn't know until the biopsy came back. He also scheduled me for a small bowel series the following week. When i went into the series, I was told by the radiologist that he could not see any blockages or signs of celiac either. Today, we got the results of new blood tests and the biopsies back.

1. The small bowel biopsy was clear.

2. The colonoscopy was clear.

3. A blood test for IBD and Crohns was positive.

Obviously I am at a loss. What else could a positive blood test for celiac mean? And if my colonoscopy was clear, how can i be positive for Crohn's disease?

I'm 18 years old, otherwise healthy. I don't exercise as much as i am told i should but I'm not morbidly overweight. The weightloss that came from the bout of diarrhea pushed me into the 'healthy' point of the BMI scale.

I leave for school six hours away in less than two weeks, so any advice or intel would be greatly appreciated. :)

You are very young....you can easily have a positive blood test, which means that they detected the autoantibodies circulating in your bloodstream, before any associated damage gets bad enough to detect. Also, you went gluten free before the biopsy and went back on gluten for only a week, which is definitely not long enough! You should eat LOTS of gluten for at least 2 - 3 months prior to biopsy to ensure that damaged villi will show up.

Another thing to think about is the fact that your small intestine is *many* feet long, and when they take a biopsy (even if they do a proper job and take several samples instead of just two or three), it's similar to taking random samples of a football field looking for dog poo. Most of the time, unless the damage is REALLY bad and widespread (which at your age may not yet be the case), you're not going to be lucky enough to hit a damaged area.

Also, Crohn's is often associated with celiac disease and the gluten free diet is recommended for Crohn's as well. Just because the gluten free diet did not do much for you in the few weeks you were on it, and you had no symptoms when you went back on gluten does NOT mean that you don't need to eat gluten free. If you have celiac disease and/or Crohn's you most certainly do need to be gluten free for the rest of your life!

I wasn't aware that there was any blood test for IBD!? are you talking about irritable bowel disease? That's just a "catch-all" diagnosis when they don't know what's wrong, IMHO. :)

Good luck!

JoAnn

P.S. I wasn't the one who originally came up with that analogy of taking samples from a large area of grass looking for doggy droppings, but I don't remember who did....was it Peter (psawyer)?? In any case, it's a great analogy!! :lol:

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      results from 13 day gluten challenge - does this mean I can't have celiac?

    2. - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      49

      My journey is it gluten or fiber?

    3. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      results from 13 day gluten challenge - does this mean I can't have celiac?

    4. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      results from 13 day gluten challenge - does this mean I can't have celiac?

    5. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      49

      My journey is it gluten or fiber?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,368
    • Most Online (within 30 mins)
      7,748

    Klairep
    Newest Member
    Klairep
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • knitty kitty
      @catnapt,  Wheat germ contains high amounts of lectins which are really hard to digest and can be irritating to the digestive tract.  They can stimulate IgG antibody production as your blood test shows.   Even beans have lectins.  You've simply eaten too many lectins and irritated your digestive tract.   You may want to allow your digestive tract to rest for a week, then start on gluten in "normal" food, not in concentrated vital wheat gluten. This explains it well: Lectins, agglutinins, and their roles in autoimmune reactivities https://pubmed.ncbi.nlm.nih.gov/25599185/
    • knitty kitty
      I take Now B-1 (100 mg) Thiamine Hydrochloride, and Amazing Formulas L-Tryptophan (1000 mg).   Both are gluten free and free of other allergens.  I've taken them for a long time and haven't had a problem with them. I take Vitamin A from BioTech called "A-25".  It's gluten and allergen free and made in the USA.  It's a powder form of Vitamin A.  I was having trouble digesting fats at one point, but found I tolerated the powder form much better and have stuck with it since.   Tryptophan and Vitamin A help heal the intestines as well as improves skin health.  I get Dermatitis Herpetiformis and eczema flairs when my stomach is upset.  So I'm healing the outside as well as the inside.   I take one 1000 mg Tryptophan before bedtime.   With the Thiamine HCl, take 100 mg to start.  If you don't notice anything, three hours later take another. You can keep increasing your dose in this manner until you do notice improvement.  Remember not to take it in the evening so it won't keep you too energized to sleep. When I first started Thiamine HCl, taking 500 mg to 1000 mg to start was recommended.  If you've been thiamine insufficient for a while, you do notice a big difference.  It's like the start of a NASCAR race: Zoom, Zoom, turn it up!   This scared or made some people uncomfortable, but it's just your body beginning to function properly, like putting new spark plugs in your engine.  I took 1000 mg all at once without food.  It kicked in beautifully, but I got a tummy ache, so take with food.  I added in Thiamine TTFD and Benfotiamine weeks later and felt like I was Formula One racing.  So cool.  You may feel worse for a couple days as your body adjusts to having sufficient thiamine.  Feels sort of like you haven't cranked your engine for a while and it backfires and sputters, but it will settle down and start purring soon enough.  Adjust your dose to what feels right for you, increasing your dose as long as you feel improvement.  You can reach a plateau, so stay there for several days, then try bumping it up again.  If no more improvements happen, you can stay at the plateau amount and experiment with increasing your Thiamine TTFD.  It's like being your own lab rat.  LoL Yes, take one Benfotiamine at breakfast and one at lunch.  Take the B Complex at breakfast. Take the TTFD at breakfast and lunch as well.  I like to take the vitamins at the beginning of meals and the NeuroMag at the end of meals.   You may want to add in some zinc.  I take Thorne Zinc 30 mg at breakfast at the beginning of the meal.   Are you getting sufficient Omega Threes?  Our brains are made up mostly of fat.  Flaxseed oil supplements, sunflower seed oil supplements (or eat the seeds themselves) can improve that.  Cooking with extra virgin olive oil, avocado oil, or coconut oil is also helpful.   @Wheatwacked likes phosphotidyl choline supplements for his Omega Threes.  He's also had dramatic health improvement by supplementing thiamine.  You're doing great!  Thank you for sharing your journey with us.  This path will smooth out.  Keep going!  
    • catnapt
      good luck! vital wheat gluten made me violently ill. I will touch the stuff ever again.  
    • catnapt
      I wouldn't consider this lucky. I can NOT tolerate the symptoms. And I googled it and I was not even getting 10 grams of gluten per day and I was extremely ill. They'd have to put me in the hospital. I'm not kidding.   I will have my first appt with a GI dr on March 4th   I will not eat gluten again - at least not on purpose   they are going to have to come up with a test that doesn't require it. 
    • xxnonamexx
      What Thiamine Hydrochloride brand do you take? Is it like the other vitamins I have added? What brand Tryptophan and amount do you take. Thanks
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.