Is The Gluten Challenge Worth It?

[Maddi]

I think I've decided that I'm not going to do the gluten challenge. I only stopped eating gluten a week ago and I have been glutened during this week at restaurants or at home not knowing something isn't gluten free. So after 3 days of being gluten-free on Friday I had a donut to start my challenge well... I immediately developed a headache, nausea, dizziness, I cried? ?, I had so much belly pain, And I had a toothache?? (Weird first time this has ever happened while eating gluten).

So I'm underweight and I've decided that I don't want to harm my body even further. I'm going for the blood test tomorrow. I do understand that it might not be accurate but it's only been a week? And prior to this week I was SEVERELY abusing gluten.... so.... will my tests really be that inaccurate? Should I still do the challenge? I don't really think that I can. I'm frustrated I just want to feel better and I want to gain weight (right now I'm so down because of my weight loss).

[cyclinglady]

I am sorry, but that is a decision you must make for yourself! Educating yourself about celiac disease will help make that decision easier!

I can tell you that I am formally diagnosed (two years) but my hubby has been gluten-free for 14 years. He refuses to do a challenge and I do not blame him as gluten makes him sick (we all know that). He will be the first to tell you that I have received more medical, family and friend support. But he has been doing just fine as many others on this forum who have had to manage their gluten intolerance on their own for all kinds of reasons.

I wish you well!

[RMJ]

It takes more than a week for antibody levels to go down from positive to normal, your tests tomorrow should be fine. Please let us know the results!

[Maddi]

Thanks guys. I'm going to try to make an appt for tomorrow and get tested... hopefully my doctor will test me since she seems to think it's all anxiety. Funny I haven't really had anxiety unless I eat gluten. I'll post my results when I get them! Either way I'm cutting out gluten out of my life.

[Maddi]

You guys won't believe what just happened. So I made an appt for 3 today with the office I go to which I've only seen PA's not a real pcp...well they just called to cancel telling me that theres nothing more that they can do for me. I told them that I wanted to be tested for Celiac and she seriously said she wanted to wait until I get my colonoscopy done. (It's scheduled for next week and I don't even know if I'll have it done). I'm in shock. Never again will I go to that office. I'm going to go to see a new doctor today. Unbelievable.

[Maddi]

Yes I understand that they've tested me for the most common illnesses but seriously I feel extremely sick. And I feel like no one is taking me seriously bc I "look" fine although I'm underweight. And my blood work has come back normal. I'm flabbergasted that they won't listen to me. It's fine I'll get my answers either way.

[blackbetty]

I don't think this process is ever plain sailing! I'm 2 weeks into my 6 week gluten challenge. Like you have had some pretty poor responses from some medics which can be so frustrating. Ultimately, I decided I did want to know for sure if I had celiac or not. I had a few reasons for this and it was just something that I wanted to know so I decided to put myself through this. I had been gluten free for 10 months so I do feel this is a huge step back in my health- but obviously for me the knowing for sure is something I want. It seems like for you, right now, you just want to feel healthy, maybe then a diagnosis isn't as important to you? you can always undertake the gluten challenge at a later date of you do want it. Or maybe wait until other ways of diagnosing come available!  

[Maddi]

I would love to know but after suffering with debilitating symptoms (not just to my body but also my mind) for almost 5 months and extreme fatigue for 2years. I know there are people who struggle for wayyy longer but I want a family with my bf and I'm already 26... I can't wait forever. I have so many celiac symptoms except for the rash and anemia. My ferrantin levels are on the low side though (20 low starts at 15) so I think is can actually be the problem. I'm hopeful but terrified that it's not. I guess only time will tell. I have an appt with a new doctor on Thursday. I do hope that my tests are still accurate since I haven't been off gluten for longer than a week (And I have been glutened a few times). You must be very strong to finish the challenge, that's something to admire. At this point I just want to feel okay again.

[Cyanste]

I think it's easier to do the challenge if you haven't been gluten-free that long. Just did it myself and it's nice to have some kind of closure on yes or no, especially when it comes to future kids.

[Maddi]

I know. I'm hopefully getting tested tomorrow. I pray my test is accurate. I actually feel better today. (: I woke up without fatigue for the the first time in I don't even know how long. I have leg cramps and bone pain but I hope that will get better with time. As will my hair loss (starting to have bald spots?????) and hopefully this Keratosis Pilaris will also disappear just as quickly as it came. And I can't wait till I gain at least 10lbs!!!!! For the first time in a long time today I feel hopeful. No depression feeling just happiness that this mightve been my problem this whole time! !!!! (:

[Maddi]

Maybe once I regain my weight and feel better I might think about doing the gluten challenge. Maybe. Lol If anything I'll have other family members tested. My aunt (my dad's twin sister) recently got diagnosed with Fibromyalgia....which you know is a diagnosis they give when they can't find anything wrong. So who knows.

[Maddi]

Just a little update. I went to a new doctor yesterday and he actually listened to me. (: I told him about how my doctors kept telling me that I'm healthy and all my blood work comes back fine but that I don't feel fine. I talked to him about my fatigue and my weight loss. Also, about my recent trip to a restaurant which left me dizzy and with nausea and night of insomnia and hot flashes. Followed by extreme fatigue the next day. He said it's interesting that you mentioned going gluten free because I was going to say that hearing about all your symptoms you sound like you have Celiac or a gluten intolerance! !! He said that to me! !!! I'm going to send him my reports from my other doctors and he's going to send me for blood work next week. He says if my blood work is negative that he's going to send me to have an endoscopy done. (: He's also going to check my hormone levels. I'm beyond happy. Oh and he also said I was wheezing and did a lung capacity test and I failed even though I've never had asthma in my entire life and I've never smoked. I'm guessing it might be related to gluten. We'll see after I'm gluten free for a while.

[icelandgirl]

That's wonderful! Sounds like you found yourself a keeper! Please keep us posted with your test results

[cyclinglady]

Good news!

[Maddi]

I also have another question since it seems I might have ncgs or Celiac... I had an endoscopy last year which came back fine except for gastritis (they didn't test for Celiac i just found out but everything looked normal) and I tested for Celiac (blood work) on Feb 2nd I believe well my test came back negative. I wasn't having as many symptoms as I am now. But I was under a lot of stress around that time which got worse and my symptoms escalated. Can celiac be triggered by stress? The only symptom I had at the time of testing was frequent bowel movements (still relatively small) My mom had surgery in March which caused my excessive stress (they found a mass but thankfully it was benign). Well right after that period of stress I started having the weight loss, the anxiety, depression, muscle aches, the bulky bowel movements, and a host of other symptoms. Could there be a sudden onset of Celiac? I'm a very impatient person. /: and I'm waiting on my blood work. Sorry for the excessive questions!

[Cyanste]

It could just be that you're under a lot of stress or it might be something else. Have you had any food allergy tests? Could be something else pesky.

[Maddi]

No, I haven't had any food allergy testing. I mean I've already cut out gluten and I used to have debilitating fatigue and that's already gone. Which I used to have fatigue EVERY DAY. I've only cut gluten 2weeks ago but I've been glutened more than twice.(that's assuming that gluten is my problem). Right after I consumed these gluten foods I did have an immediate headache, nausea and dizziness. I still have headaches though since last time I consumed gluten (accidentally) which was 5days ago... that was when my headache first appeared and now I'm getting a headaches everyday! But I no longer wake up extremely fatigued. (: I obviously still have many many symptoms but my fatigue has disappeared since last Sunday (when I had gluten 2days prior)... gluten seems to be the culprit for now.

I just don't know if a simple sensitivity can cause things like weight loss if supposedly it shouldn't cause malabsorption bc it doesn't cause damage to the small intestine. Like I said my new doctor thinks it's either Celiac or NCGS... he said he will send me for an endoscopy even if my blood tests are negative. We'll see. I just hate that I feel like the longer I wait to get tested the less accurate my tests will be. (Although most if my symptoms are still very much here).

I have so many symptoms of Celiac though. /: I just want to go back to feeling normal and gain some weight.

[Cyanste]

I know how you totally feel. It really sucks. The thing is that two weeks is nothing compared to the relief you will feel knowing whether it definitely is or is not the disease.

If you go in without having sign of damage and you are celiac, then you might waste time and money because you've already started healing.

You're also going through an invasive procedure and undergoing anesthesia... plus you're out an entire day. Whew! It's a lot. I was actually out for two.

[Maddi]

I know you're right. I guess for now I'm just going to get my blood tests for Celiac then we'll see how I proceed. Maybe I'll go gluten free for a while and then decide to do the gluten challenge to see if I really do have Celiac (if my blood tests are negative). Honestly it hasn't even been a month since I've been gluten-free so I don't think my tests should be thatttt inaccurate. I'll post my results once I get them! ! Thanks for your replies!