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Went Back On Gluten So I Could Be Tested In 2 Weeks. Now Feel So Sick!

ginger99

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ginger99 Newbie
ginger99
Posted

Hi,

Hoping someone can help. I stopped eating gluten 1 1/2 years ago because I suspected I might be sensitive. Felt so much better within a couple weeks.

But now I want to know for sure whether or not I have Celiac.

So I scheduled a test with my Dr for 12/5, and planned to eat gluten for a couple weeks beforehand. After a gluten-filled weekend, I feel horrible. Stomach pains, diarrhea, bloating, gas.

I have 2 weeks to go before the test, but I don't know if I can make it! Is this the only way I can be tested?

I've heard of a genetic test and possibly other tests--are most doctors willing to do these? Apparently I can't order tests myself as I live in NY.

Any advice would be much appreciated!

Thanks!

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ravenwoodglass Mentor
ravenwoodglass
Posted

I am sorry you are feeling so awful. It seems your body is giving you a pretty clear answer. 2 weeks will likely not be long enough for positive tests as it is advised we go back on gluten for 3 months or so. Do call your doctor, ask to speak to a nurse and explain in detail what is going on symptom wise. If you are being woken up at night by your tummy do be sure to mention that.

Some doctors will stop the challenge if it gets too bad. Recovery on the diet and becoming ill when gluten is added back in is pretty diagnostic in itself.

Skylark Collaborator
Skylark
Posted

I'm sorry you're feeling so ill. Unfortunately after a year and a half gluten-free two weeks isn't long enough eating gluten to get tested. Doctors used to say a month on gluten, but studies show it's more like 2-3 months to get a relapse bad enough that tests pick up celiac. The tests are not reliable either. My doctor has told me to not bother challenging because it's hard to get a positive test.

Genetics are interesting but not diagnostic. 30% of the US population has a so-called celiac gene. There are also people with blood and biopsy confirmed celiac who do not have a so-called celiac gene so a negative test doesn't even rule anything out.

If you're reacting this strongly to a short challenge, it's pretty clear you need to be gluten-free!

Susan.Acker Newbie
Susan.Acker
Posted

I have only been gluten free for a little over a month. Is two weeks long enough to be back on gluten before testing? It is only a short time that I've been gluten-free so I'm hoping so.

I can't tell if being gluten-free is helping yet because I am also tackling food allergies. Also having hydrogen testing for lactose, upper endoscopy for stomach pain, and I already discovered allergies/sensitivities to soy (oddly, it puts me into a deep uncontrollable sleepiness) garlic, mold, yeast and fungus (scratch testing) darn it, that's an entire pizza, LOL! and possibly rice. Milk has me suspicious as well. ah well, one thing at a time. Plus I have slow gut motility. In other words, I'm always bloated, gassy, achy, brain fogged and have gut issues so I'm frustrated and confused right now...and a little bit scared.

Sorry, I didn't mean to unload. I really only had that one question.

thank you for listening.

Susan

Skylark Collaborator
Skylark
Posted

You're welcome to unload here! That's what the board is for. It can get very frustrating when your stomach hurts all the time. Most of us have been there.

Remember that scratch testing is not a very reliable indicator of food allergies. You need to eliminate your positive foods for a couple weeks and then try introducing them one at a time. My dad and I scratch positive to all sorts of foods but we eat them without a problem.

I really don't know how long you'd need to be on gluten after only a month. The relapse studies to show a median of 3 months were on fully healed celiacs and they had been off gluten far longer. I hope you get an accurate answer.

NoodleUnit Apprentice
NoodleUnit
Posted

Hi all,

Thought I'd post here as I'm going through something similar and extra info from/for me may be helpful to Ginger99 as well :). It's been a few months since I've posted here and since I've had any accidental gluten intake. My progress since I made this post has been very marked indeed. I went from loss of sensation in my right side to almost complete normality over the last few months by removing gluten from my diet. I've had the odd issue and discovered a few extra problems with corn, potatoes and dairy products in particular but in comparison to the early days. it's been night and day.

Anyway, I've struggled to persuade my GP to test me further and get a proper diagnosis ( according the main medical body in the UK 1 in 100 people in the UK have celiac disease, yet a tiny proportion of that number are diagnosed ). I got an ulcer a week or so ago, bleeding problems, terrible heartburn, pain in my abdomen etc. And finally, heavens be praised, the doctor has put me forward for an endoscopy. I've been told to take Gluten from now until I get the endoscopy, but I've now found out that I'm having it on the 13th of December.

I had my first gluten today ( delicious burger! ) and oddly enough, felt absolutely fine when, normally, I could tell within 30 minutes to an hour. Fine until about an hour ago, that is ( which is about 6 hours from when I had the gluten ). The classic symptoms ( for me ) have come back. Terrible tension headache around my head like a too tight helmet, pain and neuropathy down my right side, particularly right arm, hand, and neck. And the universal brick-in-my-side.

So I have questions.

a/ is it normal for the reaction to take longer to happen the longer you've been gluten-free?

b/ do I need to get as much gluten down me as possible? Or just the recommended slice of toast a day?

c/ at what stage would you call the challenge off? Given that I lost the use of right arm before I found out about the gluten problem.

d/ Like Susan, I'm curious to have an idea how long I might need to be on gluten to get an effect if I've been gluten-free for a few months...

Anyway, hope I'm not hijacking the thread and hope ginger 99 and Susan are doing well.

Skylark Collaborator
Skylark
Posted

a/ is it normal for the reaction to take longer to happen the longer you've been gluten-free?

b/ do I need to get as much gluten down me as possible? Or just the recommended slice of toast a day?

c/ at what stage would you call the challenge off? Given that I lost the use of right arm before I found out about the gluten problem.

d/ Like Susan, I'm curious to have an idea how long I might need to be on gluten to get an effect if I've been gluten-free for a few months...

Anyway, hope I'm not hijacking the thread and hope ginger 99 and Susan are doing well.

a. Reaction timing can really vary.

b. The usual recommendation from doctors is actually 3-4 slices of bread worth of gluten a day.

c. I would have already called it off with such a strong and obvious nervous system reaction. What if it doesn't heal this time around?

d. I looked up some relapse studies. They are in this post.

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NoodleUnit Apprentice
NoodleUnit
Posted

Thanks, Skylark

I am concerned about c/ myself, I have to say. It's not as bad as it was, at the moment. If it gets close to that then I will call it off without a doubt. The most prominent symptom right now after 2 days is a painful right side of my abdomen. I'm getting tingling down my right side though, so will be keeping an eye on it.

I am getting desperate to get a full diagnosis though, if only so I can get some proper professional nutritional advice. Ive had a lot of problems with other grains giving me trouble and feel that getting past the GPs to a hospital nutritionist would be a massive step forward. Right now, I get fobbed off with the fact that the blood test was negative, despite the further fact that I'd already been off gluten for months prior to that, making it highly likely to be negative anyway.

Skylark Collaborator
Skylark
Posted

Yes, it's very frustrating that some health care systems refuse to cover celiac treatment without a positive test when the testing is in such a sorry state. Good luck!

UK mum Newbie
UK mum
Posted

Hi Ginger 99

My daughter is a very similar situation to you. Her blood test is scheduled for the end of January and she needs to be on a gluten diet for 6 weeks. I am not sure she can do it as she feels so I'll and misses lots of schools. If you find out whether ther are any other tests or tests that don't need you to be on a gluten diet for such a long time please let me know.

  • 2 weeks later...
NoodleUnit Apprentice
NoodleUnit
Posted

Just a heads up. I've got 5 days left til I can stop taking this horrible poison. The endoscopy is on the 13th The neuropathy is worse but still not a patch on how it was months so. What's getting unbearable is the pain in my abdomen on the right side. It tends to vary and radiate up and down, and from back to front or vice versa. Is this normal? And how quickly have people recovered from this ordeal? I want to be on the mend by Xmas if I can...

Edit: also getting terrible headaches which is something new.

GFinDC Veteran
GFinDC
Posted

There are saliva tests available in the USA. Try searching the forum for "saliva test" there are many threads on it. There is also Enterolab stool testing in the USA. I know the Enterolab testing is somewhat controversial but don't know how good the saliva tests are. There is also a home blood test available in Canada.

amberskids Newbie
amberskids
Posted

Hi,

Hoping someone can help. I stopped eating gluten 1 1/2 years ago because I suspected I might be sensitive. Felt so much better within a couple weeks.

But now I want to know for sure whether or not I have Celiac.

So I scheduled a test with my Dr for 12/5, and planned to eat gluten for a couple weeks beforehand. After a gluten-filled weekend, I feel horrible. Stomach pains, diarrhea, bloating, gas.

I have 2 weeks to go before the test, but I don't know if I can make it! Is this the only way I can be tested?

I've heard of a genetic test and possibly other tests--are most doctors willing to do these? Apparently I can't order tests myself as I live in NY.

Any advice would be much appreciated!

Thanks!

I just was reading through another thread that mentioned auto declines from insurance companies if you previously Dx with Celiac -- maybe it's not such a good idea, especially if you're feeling this awful already.

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