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

[Mitchie K]

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 

[StephanieL]

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]

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]

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]

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]

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]

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!

[BlessedMommy]

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

[StephanieL]

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]

(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]

No problem! I totally understand that, Stephanie.

[Mitchie K]

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]

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]

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.