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

Getting An Accurate Diagnosis, But Fearing The "gluten Challenge"

Mitchie K

Recommended Posts

Mitchie K Rookie
Mitchie K
Posted

Hello There, I'm new to the forum. 

 

 I just needed some advice and was wondering if there was anyone out there like me...

I've been trying to get help with a diagnosis for celiac for about 5 years now. It seems like I've been to a fistful of doctors and they all think I'm crazy. If I stick to my gluten free diet I am fine and have virtually no symptoms and go to the bathroom normally. But if the smallest amount of wheat hits my gut, like I accidentally ingest it, my colon completely shuts down and will not process. I can drink laxatives all day long and my colon won't respond. When I get "glutoned" my colon stops, and the pieces of stool become so hard and massive my body can't pass them on its own. So after one trip to the E.R for an invasive enima, I became that much more convinced that I am a celiac. 

My mom's cousin was diagnosed about 10 years ago, and my great grandpa (on moms side)  passed before his time after battling repeated surgeries to repair his impacted colon. 

my question is, I have been going completely gluten free for a few years now, so people are saying my tests will all come out negative. and I can't risk the "gluten challenge" because I can't live through the pain. What should I do? Will a DNA test give me the closure I've been looking for?  I just want the diagnosis. I want to hear the words myself. "you.are.a.celiac."

 

 

much thanks, Mitchie 

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

Celiac.com Sponsor (A8-M):


StephanieL Enthusiast
StephanieL
Posted

I think it's really important to evaluate WHY getting those words spoken to you is so important. Is hearing it more important that going through a challenge that will be very difficult for you? And what if it turns out it isn't Celiac but some other form of gluten issue? Then you go through a difficult challenge for nothing really.  

 

If you know you feel wonderful without gluten in your diet, is it worth putting that in jeopardy to hear the words?  The genetic testing is not diagnostic so you can get that down but it won't say you HAVE Celiac disease, just that you have the predisposition to getting it. Usually people really push for a diagnosis for children so they can get proper accommodations in school. It's been mentioned that as the population ages it will be important for those entering geriatric care down the line so there is some reason to want that official dx but you have to really look at if the risks are worth it.

BlessedMommy Rising Star
BlessedMommy
Posted

I had very severe issues during my gluten challenge (neurological) and I've had to accept the fact that although I have obvious gluten issues, I will never be diagnosed and for my own safety can never attempt another gluten challenge, because of the risk of going on to have another TIA or worse yet, having a full blown stroke. That is hard for me, because I would've preferred the certainty of a DX, but I'm having to accept that it will never happen.

 

You will be surprised though at how well you can do without a DX. Those close to me understand why I'm as strict as a Dx'ed celiac on my diet and my inlaws went so far as to buy a brand new grill for gluten free only items.

 

If you're certain of what you need to do, then you've got the most important thing right there.

 

Good luck on whatever you decide to do!

beth01 Enthusiast
beth01
Posted

I like you have more constipation than diarrhea.  I have to take Miralax and a stool softener twice a day to stay regular now and before the gluten free diet it was impossible to stay regular.  I thought pooping once a week was normal, the only normal I ever had and didn't know any different.

 

They are developing new testing that would shorten a gluten challenge but that could be years away.  It really is up to you on what you decide.  I for one wouldn't eat gluten for anything anymore ( maybe large amounts of money ) not even for a true diagnosis. And really, what does that mean?  Are you going to change anything you do now?  Is it more for others' validation or your own?  It really isn't necessary.  Just make sure you are getting follow up care, having your vitamin levels, cbc, and cmp checked every year.

Georgia-guy Enthusiast
Georgia-guy
Posted

BlessedMommy, a TIA is celiac related?!?

Mitchie, if you are that bad off when you eat gluten, I agree with the others....you have to ask "why do I want to hear the words said?" If the answer is "so others will believe me," then I hate to say......that will not fully work. While some may believe you, there will still be many people who won't. The most important thing is DO YOU BELIEVE YOU? And based on your post, I get the feeling the answer there is "yes I believe me, I know gluten is the problem." With that being said, I also want to emphasize the statement you need to keep an eye on your blood work to make sure you are eating right and getting the vitamins and minerals you need (see Beth's post). If you believe it, that's all you need.

BlessedMommy Rising Star
BlessedMommy
Posted

BlessedMommy, a TIA is celiac related?!?

 

It can be, yes. https://www.celiac.com/forums/topic/68665-strokes-and-tias-transient-ischemic-attacks/

 

In many case, I had many days of headaches on gluten before I developed speech problems and then numbness on my right side. I went to the ER and the doctors ran a CT scan which came back normal and diagnosed my problems as a TIA. I quit the gluten immediately and the headaches started going away. In a few days, I felt totally normal and I've never had anything like that happen since. I wouldn't do another gluten trial for a million dollars, it's just not worth it to me. I still remember the utter terror of not being able to form words correctly, even though I knew in my head what I wanted to say.

StephanieL Enthusiast
StephanieL
Posted

BlessedMommy, a TIA is celiac related?!?

 

 

There was one study and it's fairly old. Not sure if there is any newer research that link them but I haven't found this to be SUPER common in the literature. I don't want people to completely freak out about this. Yes it's scary but again, not common!

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

Celiac.com Sponsor (A8-M):


BlessedMommy Rising Star
BlessedMommy
Posted

Yes, I agree that my experience was probably more the exception rather than the rule. 

StephanieL Enthusiast
StephanieL
Posted

Yes, I agree that my experience was probably more the exception rather than the rule. 

(PLEASE know I am not discounting the terrible issue you had, I just don't want people to completely freak out! lol)

Georgia-guy Enthusiast
Georgia-guy
Posted

(PLEASE know I am not discounting the terrible issue you had, I just don't want people to completely freak out! lol)

I just started a new thread with a link to a study released March 29, 2014, that's briefly states celiac patients have "an increased risk of stroke". I am curious on that thread how many people have had unexplained TIA/Stroke. I'm looking for the full study now.
BlessedMommy Rising Star
BlessedMommy
Posted

No problem! I totally understand that, Stephanie. :)

Mitchie K Rookie
Mitchie K
Posted
  • Author

Thank you everyone for the advice. I guess maybe my problem is not that I believe me, but that I want the rest of my family to believe me; mainly my in-laws. I wanted them to get the picture and stop saying things like; "you can have one piece of this" or my personal favorite; "one bite won't hurt you" Even going so far as to cook meals with gluten containing ingredients when we go over for supper. But even with "medical evidence" It still might not be enough for them. And I need to accept that. I can't damage my body so others have proof, thats ridiculous. I know what I am and thats what matters, I think I finally see it now. Thank you.

StephanieL Enthusiast
StephanieL
Posted

Wow, they are willing to put your health at risk to make themselves feel better about themselves? That is messed up and I am sorry they are that ignorant.  Unfortunately, with that kind of attitude, I don't think anything you say or do is going to convince them :( 

 

You aren't alone in this. Many people here deal with the "Oh just a little is okay" all the time. It makes me crazy and it's so frustrating. Know you are in good company and that we here DO get it!!!

BlessedMommy Rising Star
BlessedMommy
Posted

If you go over to dinner at their house, just bring a safe dish that they can eat and don't touch anything that they offer you unless it's a single ingredient food (like watermelon or something).

 

If they have that type of attitude when gluten causes you obvious health issues, then I doubt that a celiac DX would change their mind.

Archived

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

Go to topic listing

  • 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. Rogol72
      - Rogol72 replied to klmgarland's topic in Dermatitis Herpetiformis
      3

      Help I’m cross contaminating myself,

      @klmgarland, My dermatitis herpetiformis didn't clear up until I became meticulous about cross contamination. I cut out gluten-free oats and all gluten-free foods, dairy and gluten-free rice. Additionally, getting the right amount of protein for my body weight helped significantly in my body's healing process ... along with supplementing with enough...
    2. ShariW
      - ShariW commented on Scott Adams's article in Frequently Asked Questions About Celiac Disease
      4

      What are Celiac Disease Symptoms?

      In addition to gastrointestinal symptoms like diarrhea, I had gastroesophageal reflux that was becoming intolerable despite treatment with PPIs and antacids. When I went gluten-free, the GERD lessened tremendously (as did the other symptoms).
    3. klmgarland
      - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      3

      Help I’m cross contaminating myself,

      Thank you so very much Scott. Just having someone understand my situation is so very helpful. If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    4. Scott Adams
      - Scott Adams replied to klmgarland's topic in Dermatitis Herpetiformis
      3

      Help I’m cross contaminating myself,

      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to ...
    5. Scott Adams
      - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      1

      My only proof

      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,908
    • Most Online (within 30 mins)
      7,748
    ebrown
    Newest Member
    ebrown
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Rogol72
      Help I’m cross contaminating myself,

      By Rogol72 · Posted

      @klmgarland, My dermatitis herpetiformis didn't clear up until I became meticulous about cross contamination. I cut out gluten-free oats and all gluten-free foods, dairy and gluten-free rice. Additionally, getting the right amount of protein for my body weight helped significantly in my body's healing process ... along with supplementing with enough of all the vitamins and minerals ... especially Zinc and Magnesium. I went from 70kg to 82kg in a year. Protein with each meal 3 times daily, especially eggs at breakfast made the difference. I'm not sure whether iodine was a problem for me, but I can tolerate iodine no problem now. I'm off Dapsone and feel great. Not a sign of an itch. So there is hope. I'm not advocating for the use of Dapsone, but it can bring a huge amount of relief despite it's effect on red blood cells. The itch is so distracting and debilitating. I tried many times to get off it, it wasn't until I implemented the changes above and was consistent that I got off it. Dermatitis Herpetiformis is horrible, I wouldn't wish it on anyone.  
    • klmgarland
      Help I’m cross contaminating myself,

      By klmgarland · Posted

      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      Help I’m cross contaminating myself,

      By Scott Adams · Posted

      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      My only proof

      By Scott Adams · Posted

      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisone treatment for inflammation?

      By Scott Adams · Posted

      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
×
×
  • 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.