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What Was Your Gluten 'challenge' Like?

PatrickCA

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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

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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!

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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!!

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