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

What Was Your Gluten 'challenge' Like?

PatrickCA

Recommended Posts

PatrickCA Newbie
PatrickCA
Posted

Hi everyone,

I'd really like to hear how you felt after going gluten free, and then reintroducing gluten into your diet.

I just tried to go gluten free for about 2.5-3 weeks (I know this was probably not long enough but it was hard for novice), and felt a mild improvement several symtoms -stomach and gastro. But when I went back to my usual cereal, bread, and pancakes, I had (in 24 hrs) a nasty flue-like response with a fever of 102 and joint/bone pain, and then all of the stomach pain, bloating, stools, fatigue, and (my worst problem) tingling, numbness, and dizzyness/lightheaded feeling (sort of like I've been drinking alot).

On the upside,.....I'm really excited that after about 3-4 years of escalating problems that are invading my career and straining my marriage, I *might* have found an answer. Maybe I'm a unwise, but I'm going to take the Enterolab test, and hope that can give me some answers. Anybody else have a similar experience?

I really hope to hear from you about how you might have reacted to a "gluten challenge."

-Patrick

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

Celiac.com Sponsor (A8-M):


CarlaB Enthusiast
CarlaB
Posted

Gluten challenge = pure misery.

I felt "drunk" the whole time. I would get so dizzy I would start to fall over and have to catch myself -- once I knocked a bunch of videos down in a store doing this. Bad constipation (as opposed to diarrhea that I get when I've eaten just a little gluten by accident). Felt bloated and uncomfortable. EXTREME fatigue and brain fog.

I did it for six weeks for the biopsy, but apparently it wasn't long enough. I ended up using Enterolab and was happy with their service. Like I really needed to be tested after the challenge .... it was sooo obvious what the problem was!

Guest BERNESES
Guest BERNESES
Posted

I pretty much felt like you did. Had been gluten free for two months and did it for ten days. Horrid. I'm pretty sure you don't have to be eating gluten for the Enterolab test, but there are a lot of people on this board more familiar with them. Good luck!

PatrickCA Newbie
PatrickCA
Posted
  • Author

LOL about the video store, CarlaB. Thanks for that! My balance has been bad for a while but lately I find myself using walls more. I had a similar experience at a restuarant.

Hard to explain to your guests why you fell down at a restuarant, due to balance issues and/or weakness, when you don't have a diagnosis. Embarassing

Also thanks for the comment about Enterolab Berneses. I read their site carefully, and their approach and rationale seems very reasonable...if not good marketing.

PD

CarlaB Enthusiast
CarlaB
Posted

Berneses is correct, you do not have to be eating gluten for Enterolab, so go ahead and go gluten-free and order the test! You will know in a couple weeks. BTW, welcome to the board!

penguin Community Regular
penguin
Posted

I am closing in on the finish line of my 3 month gluten challenge, meaning I have a month left :rolleyes: . I was gluten-free 4 months and then decided I wanted a biopsy. Frankly, it sucks. I started out on the challenge with C, as opposed to the normal D, I gained 20 lbs in a month, I feel like I'm drunk all the time, can't focus, extremely tired, and back to D several times a day.

Did I mention it sucks?

I can't wait to go back to gluten-free, but I want an accurate biopsy. No doctor is going to tell me to go back to gluten, I've had 4 tell me I am at least intolerant and have to be gluten-free for life anyway. I (and my dr's) want to see if there's any damage. If I don't get the biopsy done, I'd always wonder what would the results would have been.

If you're comfortable with using Enterolab and can afford it, by all means do so!

PatrickCA Newbie
PatrickCA
Posted
  • Author
I am closing in on the finish line of my 3 month gluten challenge, meaning I have a month left :rolleyes: . I was gluten-free 4 months and then decided I wanted a biopsy. Frankly, it sucks. I started out on the challenge with C, as opposed to the normal D, I gained 20 lbs in a month, I feel like I'm drunk all the time, can't focus, extremely tired, and back to D several times a day.

Did I mention it sucks?

I can't wait to go back to gluten-free, but I want an accurate biopsy. No doctor is going to tell me to go back to gluten, I've had 4 tell me I am at least intolerant and have to be gluten-free for life anyway. I (and my dr's) want to see if there's any damage. If I don't get the biopsy done, I'd always wonder what would the results would have been.

If you're comfortable with using Enterolab and can afford it, by all means do so!

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

Celiac.com Sponsor (A8-M):


PatrickCA Newbie
PatrickCA
Posted
  • Author

Penguin,

Ooops. Sorry, about the double quote. You are very quotable.

It seems pretty barbaric in this day an age to have to challenge for 3 monthes! So sorry to hear that. But hope that last month flys by and your biopsy gives you all the info you need to lay the issue to rest.

I hope I don't have to do the same thing. I suppose you when you bring your dr. an Enterolab test result, they'll want all of their own tests anyway. I recently switched drs, and had to wait 3 mo to get an appointment. So I didn't feel like waiting....

I've had a terrible past three or so years with this problem. So, If I'm better without gluten, I'll give up many of my favorite foods glady.

Hope your intestines are a little sick for your test, ;) but heal quickly!

CarlaB Enthusiast
CarlaB
Posted

If you're eating gluten free now and you've been wheat free for some time, the conventional testing may not be accurate. Your doc may or may not (more likely) be accepting of Enterolab.

I just went gluten-free on my own, and after reading the thread on being denied insurance, I'm pretty happy that I don't have an official diagnosis. It's not like we need ongoing medication, this disease only requires dietary change.

You need to do what you feel most comfortable doing.

loraleena Contributor
loraleena
Posted

I didn't do a gluten challenge, but after 3 wks without I decided to try and see what happened. I got the exact same symptoms as you! I never knew anyone else got a fever besides me. I also vomited for half a day. That was all the proof I needed. I did do enterolab after this which confirmed.

PatrickCA Newbie
PatrickCA
Posted
  • Author

That's interesting that you also had the fever. I don't know how common this is. And I cannot rule out the possiblity that I had some sort of flu, exactly 24 hrs after. But it didn't seem like a flu I've had before.

I'm still sort of in disbelief that this might be my problem, since I've been searching for years. I've had two fairly thorough neurological work-ups, and MS work-ups- one of which was at Mayo. Spinal taps on two separate occasions showed elevated protein in my CSF indicating mild inflammation and a the presence of an oligoclonal band also abnormal. But, I'm just shocked that two neuros never suggested Celiac or gluten sensitivity. I think I was down-playing (or hiding) my bowl and digestive problems out of embarassment.

I'm looking forward to getting some results from Enterolab. Did you have the genetic tests done as well?

CarlaB Enthusiast
CarlaB
Posted

I had the genetic tests only because I wanted to know what I was passing onto my children. I have two gluten intolerant genes (HLA DQ1), which makes me ultra-sensitive to gluten, but most likely not celiac. One of my children so far has a gluten-intolerance. She has learning difficulties that I hope are cleared up by going gluten-free. I guess we'll know this next school year. My eldest daughter who is 18 eats gluten-free by choice. She was not tested, but she feels better. She was no where near as sick as I was at her age (in fact, she wasn't sick at all).

God only knows what kind of goofy genes my hubby is passing on!! :lol::lol: At least one of my kids makes that same face when her picture is taken, and she is not gluten intolerant!!

Archived

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

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


  • Member Statistics

    • Total Members
      127,723
    • Most Online (within 30 mins)
      7,748
    Kathi B
    Newest Member
    Kathi B
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.4k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • cristiana
      My Adult daughter is blaming me for her "possible" Celiac disease.

      By cristiana · Posted

      Hi Marie Welcome to the forum. I am so sorry your daughter is pointing the finger at you like this.   I am afraid children of any age can be very cruel to their parents - I certainly look back at some of the things I said to my mother and father in the past, and wish I could unsay them.  Sometimes people just need a safe place to vent, and unfortunately having a go at one's parents is the all too easy option.  If she is anything like me, she will regret what she says one day.  (Oh... if only I had the chance rewind the clock!) I just wanted to add one more thing to Trent's and Scott's excellent posts and that is regarding diet:  I have to say, not one person  (my nutritionist, my gastroenterologist or GP) has EVER suggested that a poor diet was the cause of my coeliac disease.    In all the various clinics I have attended these past nearly 12 years no-one has ever asked if I was brought up on processed food, or questioned if I eat 5 fruit and veg a day.  Sure, unfortunately I am only too well aware that I could do a lot better with my diet and it's a constant challenge for me not to give into what I like (unfortunately I've always had a sweet tooth).   But I know some super healthy 10 fruit and veg a day types who still got coeliac disease, and equally, a lot of people who eat all the wrong stuff and they still have cast iron stomachs. Do encourage her to get checked though - it may be that she hasn't got coeliac disease at all. Come back to us if you need any more support through the process. Cristiana
    • trents
      My Adult daughter is blaming me for her "possible" Celiac disease.

      By trents · Posted

      Welcome to the forum, @Marie70! The first thing to know is that celiac disease has a genetic base. The two main genes that have been identified as providing the potential to develop celiac disease are HLA-DQ2 and HLA-DQ8. About 40% of  the general population carries one or both of these genes. However, only about 1% of the general population ever develops celiac disease. So, we know that in addition to possessing the genetic potential to develop celiac disease, there has to be some triggering environmental or medical "stress" factor (or factors) that switches the gene or genes on such that they are awakened from their latent condition and become active. What may be the triggering factor (or factors) is the subject of much debate. Here is an article that discusses this subject: Second, what will your daughter have to say if her testing for celiac disease is negative? She may have to add crow to her diet. Third, and this is what I really want to focus on because my wife and I are dealing with something similar in our relationship with our own adult daughter: the real problem is not whatever shortcomings you, as the family cook, may have had when providing meals, the real problem is with your daughter's heart/soul/attitude. If it turns out to be true that she has celiac disease, it is likely she would have developed the condition sooner or later even if her diet had been healthier while growing up. She is angry about the prospect of having to deal with the dietary and social limitations that having celiac disease would impose upon her. She doesn't want to face up to the fact that this may be a new reality that will dramatically changer her life and she is looking for someone or something to blame. And she has conveniently turned her wrath on you rather than saying to herself, "Okay, this is what it is. Now what can I do to make adjustments in order to with it the best way I can?"  When faced with a life-changing reality, people will either accept it for what it is, make adjustments and move on or they will become angry and look for something or someone to blame and get stuck. For now, at least, your daughter has chosen the latter option. Don't let her problem destroy both of you.
    • Scott Adams
      My Adult daughter is blaming me for her "possible" Celiac disease.

      By Scott Adams · Posted

      It sounds like you’re carrying a lot of guilt, but please know that you didn’t cause your daughter’s potential celiac disease or your son’s Crohn’s. These conditions have strong genetic components, and while diet can influence symptoms, it does not cause autoimmune diseases. You did the best you could with the knowledge you had at the time, and no parent is perfect. Your daughter’s frustration is understandable, but it’s likely coming from a place of fear and uncertainty rather than true blame. Let her get tested, and if she does have celiac disease, you can support her moving forward. Instead of focusing on guilt, try shifting the conversation toward healing and learning together. You’re not alone, and you don’t deserve to carry this weight on your own. This article might be helpful. She needs to be screened for celiac disease before she can be sure that she has it. Another approach not discussed in the article is a genetic test for celiac disease, which she could do without eating gluten.      
    • Marie70
      My Adult daughter is blaming me for her "possible" Celiac disease.

      By Marie70 · Posted

      Hello, My mid twenties daughter is blaming my husband and I for her celiac disease.  She has not been diagnosed at all, but GOOGLE has informed her she has it.  She is going to go get tested now, but my question is, did we?  I was not the best cook while she was growing up and often made quick processed food for meals.  She is blaming us for what she ate growing up and is angry that we didn't feed her better.  I don't know how to react and all I could tell her was I was sorry.  Her older brother has Crohn's disease and he was diagnosed as a teenager.  She is also furious with us that we didn't change his diet either.  I don't know why I didn't and I am having so much guilt I don't even know how to handle this situation.  Both sides of our family have a history of IBS, Celiac and Crohn's disease.   I guess I just wanted to hear from anyone out there that can either point blame at me (I can accept it) or tell me that the food she ate growing up didn't have an affect on her.  I am thinking it most likely did. Thank you, Marie
    • RMJ
      High blood test numbers - with scales. Any advice?

      By RMJ · Posted

      I’d say celiac is likely.  Please continue to eat plenty of gluten until your endoscopy to be sure that any gluten-related damage can be seen.  Plus it gives you one last chance to enjoy your favorite gluten-containing foods. I hope the endoscopy/biopsies give you a definitive answer. 
×
×
  • Create New...