Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Really Scared Of A Gluten Challenge, I Need Some Advice Quick

Ikgbrd

Recommended Posts

Ikgbrd Apprentice
Ikgbrd
Posted

So I went to see my GI for the first time today after about three or four weeks off gluten (on the recommendation of my family doctor.) Though I had an elevated level of deamidated gliadin IgA, they told me that it was odd that nothing else on my celiac panel was abnormal and it means that it might not be celiac. They insisted that I do a gluten challenge and get an endoscopy in two weeks. I'm terrified to do that though.

 

Though I've been mostly gluten free for three or four weeks, last week I ate some chicken wings that I'm pretty sure were contaminated, and the next night I had diarrhea all night long. Since then my stomach's been really sensitive again and I was even hit with another bought of diarrhea a few days ago. Perhaps it wasn't eating the chicken that caused my system to start acting up again, but the thought that even that little gluten could've caused it scares me. I can't go two weeks with diarrhea all the time, I have a job and a life, and my stomach problems are disruptive enough as it is. I asked the GI if they could possibly rush the endoscopy because I'm still having some clear symptoms, but they told me that they couldn't.

 

I'm strongly considering just staying gluten free on my own for a few more months and seeing if any more improvements happen. My second week gluten free I felt amazing, and maybe I just need to take some more time to heal. I know it'd be better to test now rather then later, but I can't just put my life on hold living in fear of diarrhea or vomiting every day. Either way, I need to decide quickly because my endoscopy is in two weeks if I don't cancel. How did you guys react to a gluten challenge? What should I expect? I really need some help.

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

Celiac.com Sponsor (A8-M):


GottaSki Mentor
GottaSki
Posted

If you are reacting strongly after removing gluten -- I would highly suggest going forward with the endoscopy with or without the gluten challenge.  This test can provide a lot of useful information about the status of your upper digestive tract -- do make sure they take 6-8 samples of the small intestine -- not all GIs do this -- I'll check back later to see if you want more detail -- I have a great paper regarding proper endoscopy practices for celiac disease -- but the link is on another computer.

 

If you can tolerate a small amount each day do so -- most major Celiac Centers recommend the equivalent of 1-2 pieces of gluten containing bread.  Perhaps have a grilled cheese (if you don't have a dairy issue) each evening???

 

Hang in there :)

Deaminated Marcus Apprentice
Deaminated Marcus
Posted

To me, your DGP - IgA test is valid.
As others have said before you don't have to be positive on all the tests on the panel.
That is lack of knowledge on the doctor's part.

Here is some information on the DGP - IgA

sensitivity: 82-96%

specificacy: 93-96%

Open Original Shared Link Disease_long_FINAL.pdf

Here is another article about DGP-IgA
Open Original Shared Link
 

Ikgbrd Apprentice
Ikgbrd
Posted
  • Author

Do you think the GI would be willing to do an endoscopy while I'm not on gluten? They seemed very insistent that I do this even as I explained my doubts and how this we be considering how much I work. I can't afford to miss that much and my managers will only be so understanding.

I'm worried I I tell them I'm not on gluten they just won't do it. But on the other hand if I don't tell them I might get misdiagnosed and they won't do it again. I just really don't want to risk gluten. I'm scheduled to work five doubles for the next few weeks, and I just can't do that if I'm throwing up or plagued by diarrhea.

GottaSki Mentor
GottaSki
Posted

The longer you are gluten-free...the less accurate this initial data is.  It really is up to you...I have heard of GI's going forward without the challenge when it really is impossible for the patient to consume gluten without great distress. 

 

Are you particularly partial to this GI? 

Is he/she the best Celiac Disease GI where you live? 

For decades the rules have been set -- gluten challenge then biopsy, but these rules are changing. 

 

Severe damage from Celiac is not going to resolve overnight, but the best analysis does come while eating gluten -- here is the key -- you have already removed gluten -- my vote is to get the endo just as soon as possible -- again...this is my opinion.

Ikgbrd Apprentice
Ikgbrd
Posted
  • Author

I've actually never even talked to the actual GI. I was refered there by my family doctor and my appointment ended up being with the nurse practitioner. She consulted with him while I was there, but didnt let me speak with him personally. I asked if they could rush the endoscopy bit she said that they were booked until July 10th, which is when I'm scheduled. I don't even think I have enough time to eat the proper amount of gluten for it to really show.

I'm pretty frustrated with all of my doctors at this point.

GottaSki Mentor
GottaSki
Posted

I've actually never even talked to the actual GI. I was refered there by my family doctor and my appointment ended up being with the nurse practitioner. She consulted with him while I was there, but didnt let me speak with him personally. I asked if they could rush the endoscopy bit she said that they were booked until July 10th, which is when I'm scheduled. I don't even think I have enough time to eat the proper amount of gluten for it to really show.

I'm pretty frustrated with all of my doctors at this point.

 

Given this info -- I suggest eating gluten if you can tolerate it until the endo.  If they asked if you continued to eat gluten, answer "as much as I could tolerate".  

 

You are correct that two weeks isn't much time for a challenge...but you also have not been strictly gluten-free for very long.  My vote remains get the endoscopy done sooner rather than later to gather data that is close to the removal of gluten as possible.  If you are having a hard time ingesting gluten right now -- this will only get worse with time gluten-free -- thus doing a longer gluten challenge in the future even more difficult for you.

 

Good Luck to you...let us know how it turns out or if you have any more quesitons :)

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

Celiac.com Sponsor (A8-M):


Ikgbrd Apprentice
Ikgbrd
Posted
  • Author

I've decided I'm definitely not going back on gluten for this test. Even without it I've suffered from diarrhea and abdominal pain this last week, which is starting to ease up finally. I'm just not willing to put myself through the beginning healing process again.

I've been taking nortryptline lately, which has been helping with the diarrhea a lot. It was originally prescribed to me a year ago when my doctors diagnosed IBS, and though it stops working if I use it too regularly, it helps if I take it every other week or so. Is anyone else hear familiar with this drug? Is it harmful if its used by someone with celiac?

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      130,870
    • Most Online (within 30 mins)
      7,748
    Chaoticcrud
    Newest Member
    Chaoticcrud
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Diagnosed w Celiacs, but reacting to gluten-free Digiorno Pizza AND Kraft Zesty Italian Dressing

      By trents · Posted

      As I suspected, xanthan gum is one of the ingredients. It is a polysaccharide used as a texturing agent in many gluten-free products. It's hard to digest and causes distress for many celiacs. I can't say for sure if that was the problem but you might be on the lookout for it in the future. Muscle spasms can be caused by magnesium deficiency. Are you taking any vitamin and mineral supplements? I mean some things more potent than a multivitamin?
    • Wheatwacked
      Gluten-Free Newbie

      By Wheatwacked · Posted

      Hello @Suze046 In the western world 40 to 60 percent are low or deficient in Vitamin D.  Malabsorption from Celiac Disease, avoidance of UV from the sun and seasonal variations can result in low vitamin D.  A simple 25(OH)D test will tell you your status.  Low vitamin D affects immune system, bone health, mental health.  I keep mine around 80 ng/ml (200 nmol/L). Choline has many functions in our body.  From the neurotransmitter Acetylcholine to fat digestion.  It is made by our bodies but in insufficient amount.  The major dietary source is from beef and eggs.  The RDA is 500 mg a day.  That would be equivelant to 3 eggs or 10 cups of cooked brocolli a day.  Choline is a significant portion of biliary phospholipids and is a crucial element for bile function.n.  I found taking Phosphatidly Choline capsules helps.  A homocysteine test can be indicative of choline deficiency.  Could we be overlooking a potential choline crisis in the United Kingdom? NIH Choline Fact Sheet Vitamin D Is Not as Toxic as Was Once Thought
    • annamarie6655
      Diagnosed w Celiacs, but reacting to gluten-free Digiorno Pizza AND Kraft Zesty Italian Dressing

      By annamarie6655 · Posted

      @trents thank you so much for your response!  When i was diagnosed, I was exhibiting mainly joint pain, hair loss, bloating, and allodynia (painful feeling from non painful stimuli). The muscle spasms only started after diagnosis, and it seems to only happen when I am severely glutened. It’s only happened twice, but it definitely makes me nervous when it happens.    In regard to the pizza, thats what i saw after i got sick from it. I’m still trying to figure out how to switch to ALL certified gluten-free goods.    for the dressing, here is the ingredient list:  WATER, VEGETABLE OIL, VINEGAR, SUGAR, GARLIC, SALT, RED BELL PEPPER, ONION, CONCENTRATED LEMON JUICE, XANTHAN GUM, POTASSIUM SORBATE, HERBS, CALCIUM DISODIUM EDTA, MONOACETIN, SPICES. and the link: https://www.kraftheinz.com/en-CA/kraft/products/00068100903577-zesty-italian-salad-dressing  
    • trents
      Diagnosed w Celiacs, but reacting to gluten-free Digiorno Pizza AND Kraft Zesty Italian Dressing

      By trents · Posted

      Welcome to the forum, @annamarie6655! Are the muscle spasms and joint aches a new pattern of reaction to gluten or have you experienced these in the past? Concerning DeGiorno's "gluten-free" pizza, we have had many reports from celiac.com members of gluten reactions from consuming this product. I believe it is one of those "gluten-free" products that is made from wheat (speaking of the crust component) that has been processed in such a way as to remove most of the gluten. The FDA regs allow food companies to use the claim "gluten-free" as long as the product contains no more than 20ppm of gluten. This works for most celiacs but not for those on the more sensitive end of the spectrum. There is another industry standard known as "Certified Gluten-Free" that is stricter, requiring no more than 10ppm of gluten. Certified Gluten-Free products use the "GFCO" logo. Concerning the salad dressing, could you list the ingredients in another post or link it? There are certain other ingredients besides gluten commonly used in gluten-free manufactured food items to give them acceptable textures that give a lot of celiacs problems. 
    • annamarie6655
      Diagnosed w Celiacs, but reacting to gluten-free Digiorno Pizza AND Kraft Zesty Italian Dressing

      By annamarie6655 · Posted

      Hello, so I was diagnosed with Celiacs about 8 months ago. After being diagnosed, I have been trying very hard to maintain a completely gluten-free (and celiac safe) diet.  Two of the main times I had a huge reaction, it was from: - gluten-free Digiorno Pizza w Pepperoni - Kraft Zesty Italian Dressing (this was in canada if that changes anything) Both are marked as gluten-free. Following eating these items, I had a severe bout of diarrhea, uncontrollable and heavy muscle spasms throughout my whole body, and aching throughout every joint.   If these are both gluten-free, why would I be reacting to them? Should I be worried about a separate allergy?  In regards to the muscle spasms, should I follow up with someone about that?
×
×
  • Create New...