So Confused

[GlutenFreeAustinite]

So, i'm 18 years old, been gluten free for almost 2 years due to migraines. After consulting with my doctor, I've started eating gluten again, until the end of May, so that I can be blood tested for celiac disease, with a possible biopsy. I've been back on gluten for two days, and my symptoms are surprising. Normally when I eat even small amounts of gluten, I get sick (really bad stomachache for several days, bad migraine), and while I definitely don't feel healthy, my reaction is unusually mild considering I've eaten a TON of gluten comparatively speaking. (I'm supposed to eat one gluten-filled meal per day--so I've had flour tortillas, Oreos, battered chicken) Thus far, I've had a constant stomachache, a headache one evening, and constipation. While my stomach hurts, it doesn't feel like a typical gluten reaction, and I keep doubting myself. Am I really gluten intolerant/celiac/whatever? Have I subjected myself to two years of unnecessary change and irritation? I know the purpose of this gluten challenge is to figure out what's going on, but now I don't even know if I need to figure anything out!

Sorry for the rant, but I'm utterly frustrated. Yes, I know it's only been two days, but ugh!

[IrishHeart]

I've been back on gluten for two days, and my symptoms are surprising. Normally when I eat even small amounts of gluten, I get sick (really bad stomachache for several days, bad migraine)

Thus far, I've had a constant stomachache, a headache one evening, and constipation. While my stomach hurts, it doesn't feel like a typical gluten reaction, and I keep doubting myself.

First of all, are your migraines gone off gluten? Then how was this "unnecessary change and irritation"?

Maybe you were expecting it to be more intense, but you admit readily that you have:

a constant stomachache

a headache

and constipation

Those aren't bad enough? Yikes! they sound pretty bad to me.

The point is--If you did not have a gluten problem, you would not have ANY symptoms.

I think you are still not feeling the cumulative effects just yet. It may well get worse.

Also, one gluten item a day is not a lot of gluten.

It is my understanding that you need to eat a lot more than that for 3 months before testing.

[GlutenFreeAustinite]

The migraines are gone, yes, but they don't appear to be a consistent symptom of glutening...the few times I have gotten into gluten, I haven't had one.

I do have a stomachache, but I typically have way, way, worse from much less gluten. That's what's odd--I'm definitely reacting, but it's much milder than normal.

I have been eating more than one gluten item per day--just last night, I had chicken with breading, breaded onion rings, and Oreos. Friday night I had flour tortillas. So I've been eating a TON. My thought is that I've shocked my system, and am not fully reacting yet because I've been overloaded.

[IrishHeart]

Keep eating, give it a few days....I hope you can tolerate it.

I am afraid of what's coming for you, to be honest.

Take probiotics to keep the bowels running. Constipation is no picnic.

I still think it takes more than a month on a gluten challenge, hon. Takes 3 months, I thought?

Again, if you did not have a gluten intolerance, you would have NO symptoms. See what I am saying?

Good luck and I hope it is not too rough for you.

[GlutenFreeAustinite]

That's the plan....the reaction isn't fun now, but i have a feeling it will get worse.

Psyllium fiber helped with that today, so I'll keep taking it, and hope it gets better. In my book, it's better than the opposite, but I don't like it.

I'm not entirely sure. My doctor says the amount of time typically varies--anywhere from 4 weeks to three months.

That's what I was thinking too. I'd feel fine if I wasn't at the very least gluten intolerant.

Thanks!

[IrishHeart]

That's the plan....the reaction isn't fun now, but i have a feeling it will get worse.

Psyllium fiber helped with that today, so I'll keep taking it, and hope it gets better. In my book, it's better than the opposite, but I don't like it.

I'm not entirely sure. My doctor says the amount of time typically varies--anywhere from 4 weeks to three months.

That's what I was thinking too. I'd feel fine if I wasn't at the very least gluten intolerant.

Thanks!

You bet, hon. I really feel bad that you're going through all this, but in the long run, DX or not, please....listen to your body.

I would hate to see your vicious migraines return. I had those intermittently for 30 years....and I would have just as soon blown my own head off to make that pain stop. Those are AWFUL.

[pain*in*my*gut]

The migraines are gone, yes, but they don't appear to be a consistent symptom of glutening...the few times I have gotten into gluten, I haven't had one.

I do have a stomachache, but I typically have way, way, worse from much less gluten. That's what's odd--I'm definitely reacting, but it's much milder than normal.

I have been eating more than one gluten item per day--just last night, I had chicken with breading, breaded onion rings, and Oreos. Friday night I had flour tortillas. So I've been eating a TON. My thought is that I've shocked my system, and am not fully reacting yet because I've been overloaded.

If I were you, I would try to eat more gluten foods for a true gluten challenge. Breading on fried foods does not have that much gluten. You need to eat the equivalent of 3-4 slices of bread EVERY DAY for at least 4-6 weeks ( sometimes longer) for the results to be valid.

I hope your challenge stays tolerable!

[GlutenFreeAustinite]

I've been eating quite a bit...I'm trying not to shock my system too badly in the first three days. Like today, I ate pita chips and two yeast rolls. I'll start eating more true bread product this week.

I'm actually not too bad, and while I still have my stomachache, I can manage this for now.

One big question I've always wanted to ask....how much of a given gluten reaction can be attributed to not having eaten the stuff for a while? Like when I was vegetarian, I started adding back meat, but for a while, I couldn't eat too much of it because the meat upset my stomach. Does something similar happen with gluten?

[nora-n]

I too get lots of symptoms when getting little gluten but not much when provoking with cookie or much gluten. Have heard it is like that with others too.

Ehen I had the gluten challenge, I then got the mouth blisters back, and migraines, then I had to double the thyroid meds and my weight started dropping off. I stayed tired or got worse (I was as tired when I got up as when I went to bed, and I had a really bad sleep)

After the gluten challenge and staying offf gluten, migraines disappeared, cold sores totally stopped, and after gluten-free for sevenmonths I woke up one morning and was not so awfully tired.

But, no immediate reactions back then.

[ravenwoodglass]

I've been eating quite a bit...I'm trying not to shock my system too badly in the first three days. Like today, I ate pita chips and two yeast rolls. I'll start eating more true bread product this week.

I'm actually not too bad, and while I still have my stomachache, I can manage this for now.

One big question I've always wanted to ask....how much of a given gluten reaction can be attributed to not having eaten the stuff for a while? Like when I was vegetarian, I started adding back meat, but for a while, I couldn't eat too much of it because the meat upset my stomach. Does something similar happen with gluten?

If you don't have problems with gluten then adding it back into your diet is not going to cause a problem. It can take up to a week for the antibodies to build up and cause a definate reaction after we have been gluten free for a bit. You are starting to react already but the worst may still be to come. I hope you don't get too ill but if you do get severely ill do contact your doctor and let him/her know. Some of us are not able to do a full challenge.

[Greyhound]

It is my understanding that you need to eat a lot more than that for 3 months before testing.

THREE MONTHS??! I was told it should be six weeks. Now I'm definitely not going on gluten just for a biopsy.

[IrishHeart]

The last I heard it was 3 months.

Let me verify that with the Mod who posted that info. BRB!

.............

okay, some Celiac specialists say 2 months, but the 3 months gluten challenge is best for the blood work.

(The University of Chicago Celiac Disease Center)

If the blood work is 3 months, I would think the biopsy is the same.

Maybe this is wrong?

If your symptoms become impossible and life-threatening, you should stop it and tell the doctor.

He should be able to DX you from symptoms alone.

(I would not make it past 2 days back on gluten myself. The neurological symptoms alone would be horrid.) I think the challenge for biopsy is barbaric, IMHO

[IrishHeart]

THREE MONTHS??! I was told it should be six weeks. Now I'm definitely not going on gluten just for a biopsy.

Did your doctor tell you this?

Maybe your doctor has a different opinion.

Do what YOU think is best.

[Greyhound]

If your symptoms become impossible and life-threatening, you should stop it and tell the doctor.

He should be able to DX you from symptoms alone.

(I would not make it past 2 days back on gluten myself. The neurological symptoms alone would be horrid.) I think the challenge for biopsy is barbaric, IMHO

They're not life threatening health-wise, but they threaten my job (stupid mistakes and bad customer service from brain fog) and are damaging my studies (I'm studying for a degree with the Open University).

Did your doctor tell you this?

Maybe your doctor has a different opinion.

Do what YOU think is best.

It's what I've heard in several places but I can't remember where now. I do NOT want to eat a single bit more gluten but every time I post on the Coeliac UK page on Facebook for advice on this or that, people just keep saying 'you should get diagnosed. You MUST eat gluten. It's worth it in the long run. A few more weeks wouldn't hurt'.

I know I need to see a doctor and I know that getting a proper diagnosis (if it is coeliac disease) requires a biopsy, but it's painful to eat gluten and I simply cannot do it any more. I haven't the strength. People say 'if it's been years then a few weeks wouldn't make any difference' but imagine you'd been locked up indefinitely for several years and someone suddenly came along and said 'oh, you can go now' and then, finally, you had a week of freedom and then someone came along and said 'would you mind going back to being locked up in your cell for three more months?'. Suddenly your tolerance of that situation would be much much lower, even though you'd endured years of it already. It hurts so much, I can barely stay awake, I can never get any refreshed sleep (which can get very scary), I get depressed, and I just can't do it.

[IrishHeart]

They're not life threatening health-wise, but they threaten my job (stupid mistakes and bad customer service from brain fog) and are damaging my studies (I'm studying for a degree with the Open University).

It hurts so much, I can barely stay awake, I can never get any refreshed sleep (which can get very scary), I get depressed, and I just can't do it.

That sounds life-threatening to me! When I was gluten-headed, I could not drive anymore. I was impaired neurologically. Imagine if I hurt someone or myself?

Hon, it sure sounds like you need to stay off gluten.

What would be the advantage to having a "firm" diagnosis?

That is what motivates most people to pursue one, no matter how much it makes them ill.

[GlutenFreeAustinite]

Yikes, those neuro symptoms sound super scary! o.O

I've been weirded out all day because my symptoms seem to fluctuate. One minute I have a really bad stomachache, an hour later, nothing, just a grumbly stomach (though not due to hunger) and what I think is acid reflux. I've had really intense brain fog and inability to concentrate all afternoon. I feel like I'm getting a migraine, though again, I have it one minute and it's gone the next. I'm also still constipated (awkward) and not sure what to do about that, any suggestions?

[IrishHeart]

I would take probiotics for the bowel issues that are starting to erupt.

I also saw that you said on another thread that you are starting to have irritability.

Hon, I fear you are going to keep getting worse as you continue to do this challenge.

Can the doctor just DX you from symptoms returning ON gluten?

[tom]

The last I heard it was 3 months.

Let me verify that with the Mod who posted that info. BRB!

.............

okay, some Celiac specialists say 2 months, but the 3 months gluten challenge is best for the blood work.

(The University of Chicago Celiac Disease Center)

...

Haven't people been dx'd w/ 6 wks? Lotta Drs use 4 wks or 6 wks, apparently, by what ppl have have posted here. They can't be diagnosing none of their gluten challenge patients w/ celiac, can they?

Certainly from a statistical standpoint, 3 months picks up more of the tail of a distribution but at some point picking up just one more percent might mean another x # of weeks for everyone.

I'm not sure it even works out much better for that one patient in a hundred making the switch to a positive test. We see our share of ppl going gluten-free w/out dx - maybe he or she was going gluten-free either way.

I can understand that researchers prefer 3 months. Some might like longer.

Wish there was more research on this. Maybe some people neg at 6 wks would do another 6 wks.

Hope it's not too bad for you challengers.

[GlutenFreeAustinite]

@Irish Heart, my doctor won't diagnose based on symptoms, sadly, though he does agree that it seems like I shouldn't be eating it. And the school I'm going to requires an official medical diagnosis before they can make accommodations.

Not to mention, I'm only 18. I want to know if I have celiac disease, which has repercussions for fertility, and a host of other things should I continue to mildly gluten myself (through shared fryers, wheat in the house) or gluten intolerance. It doesn't make a huge difference in the way I will continue to live, but knowing if I have an autoimmune disorder would be beneficial. My grandmother had a TON of medical issues that I suspect were related to celiac, and I'd like to know now instead of scrambling when I'm 70 to find out what's wrong with me.

[IrishHeart]

Then, you may have to put up with the symptoms if your doc is being so rigid. Sorry. He could still write something stating your need to be gluten-free.

If I were you, I'd stay off gluten regardless of the test results.

You already know you are intolerant of it.

I have had dozens of health ramifications from Un-DXed celiac and my whole life would have been drastically different.

I may have had children, for starters.

You do not need to convince me of your desire to get a firm DX.

I fought for one for 3 years. I'm with you on this!

I just feel bad you are suffering for it.

[Mnicole1981]

Then, you may have to put up with the symptoms if your doc is being so rigid. Sorry. He could still write something stating your need to be gluten-free.

If I were you, I'd stay off gluten regardless of the test results.

You already know you are intolerant of it.

I have had dozens of health ramifications from Un-DXed celiac and my whole life would have been drastically different.

I may have had children, for starters.

You do not need to convince me of your desire to get a firm DX.

I fought for one for 3 years. I'm with you on this!

I just feel bad you are suffering for it.

Do you mind if I ask what other health issues you had to deal with? I went to another doctor today who thought it best we check my thyroid and hormones because of my night sweats and weight loss. I don't have any kids either.

[IrishHeart]

Do you mind if I ask what other health issues you had to deal with? I went to another doctor today who thought it best we check my thyroid and hormones because of my night sweats and weight loss. I don't have any kids either.

My story has been told many times on the forum and it is very complicated, but suffice to say, I had DOZENS of symptoms. Skin, joints, muscles, nerves, my reproductive health, endocrine system-- EVERYTHING was affected.

Night sweats and a drastic weight loss were among them.

Have your thyroid checked as it is often associated with celiac.

Have you seen this list? Take a look at it and see if your symptoms fit.

Open Original Shared Link

[Mnicole1981]

Just about all of them fit...

[IrishHeart]

Just about all of them fit...

all 300 ??? yikes.

[Mnicole1981]

all 300 ??? yikes.

Well, not literally. Just more of them than I realized, especially looking back through the years.