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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Doctors Who Have No Clue
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39 posts in this topic

If the pain is after meals it would indicate something other than an ulcer, which is why I asked. That's good!

I was given an RX for a med that's a combo Amitriptolyne/librium many years ago for anxiety, depression, and IBS. I'm still taking it. It seems to agree with me just fine? We are all different. I say..give it a try and see how you feel? If it makes you sleepy, that side effect will probably wear off within 2 weeks? Your body adjusts to it.

It didn't make me gain weight, but it can make *some* people crave sweets, so be aware of that and choose your sweets wisely. Fruit is good..candy, not so much. ;)

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Yep, I've read all about it and maybe it just proves how desperate I feel at this time that I'm willing to try it. I also know a couple people who've taken it and not had any bad side effect issues...I just need something to get me through the next 2-3 months until I am back in the States. And something that helps me sleep would be welcome at this point because my sleep has gotten so fractured I can't seem to catch up. Being exhausted definitely does not help with dealing with the pain issues. *sigh*

Honey, you should absolutely try anything to relieve the pain and insomnia. I have been in your shoes and I tried EVERYTHING, too.

Again, I was not trying to dissuade you, just inform.

You may tolerate it like a champ! I hope so. I want you to feel better.

Do whatever you need to do!

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If the pain is after meals it would indicate something other than an ulcer, which is why I asked. That's good!

I was given an RX for a med that's a combo Amitriptolyne/librium many years ago for anxiety, depression, and IBS. I'm still taking it. It seems to agree with me just fine? We are all different. I say..give it a try and see how you feel? If it makes you sleepy, that side effect will probably wear off within 2 weeks? Your body adjusts to it.

It didn't make me gain weight, but it can make *some* people crave sweets, so be aware of that and choose your sweets wisely. Fruit is good..candy, not so much. ;)

I'm willing to try it...would be such a relief to find something that helps at this point!

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Honey, you should absolutely try anything to relieve the pain and insomnia. I have been in your shoes and I tried EVERYTHING, too.

Again, I was not trying to dissuade you, just inform.

You may tolerate it like a champ! I hope so. I want you to feel better.

Do whatever you need to do!

Oops, sorry if I came across curtly. Blame it on exhaustion.

You always provide amazing and useful information and I am always thankful for it. I realize you weren't trying to dissuade me.

I'm just tired of sitting around waiting while the doctors scratch their heads and dither. I want to try something. Anything. Maybe it will help!!!

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Oops, sorry if I came across curtly. Blame it on exhaustion.

You always provide amazing and useful information and I am always thankful for it. I realize you weren't trying to dissuade me.

I'm just tired of sitting around waiting while the doctors scratch their heads and dither. I want to try something. Anything. Maybe it will help!!!

No, you were not curt at all, Babs! I took no offense whatsoever. No worries. I was being encouraging, saying, "go for it if you want to"!!

I completely understand how you feel. I really, really do. It actually makes my heart hurt sometimes to read posts like yours. It was my life for so long--constant, unrelenting pain.

I think you should give it a try! :)

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Update...I started on 10mg of amitriptyline on Friday evening last week and so far, no terrible side effects (slept like the dead the first two nights but last night it wasn't so coma-inducing!). Best thing is, it has made a dent in the pain; I even went for a short hike on Saturday afternoon and wasn't completely wrecked at the end!

I saw my usual gastro this morning (she's back in town finally) and she recommends giving it at least 2 weeks to really take effect. She also says due to the location of my pain and the fact that I am responding to the medicine already she thinks we should hold off on any more tests for at least those two weeks (she was pretty dismissive of the other doctor who suggested colon cancer -- he didn't even seem convinced but seemed to think he had to suggest something!) This is fine by me because I am sick of dealing with doctors and labs at this point! She still thinks that a big part of the pain issue is my GI tract is hyper-sensitized at this point and is reacting and sending pain signals when it shouldn't.

All I know is so far the medicine has helped me feel a bit better and I can function at a level closer to 'normal.' YAY! I just have to get through the next 3 months and then I've got the appointment with Dr. Fasano. This might just do it for me. Whew.

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I am very glad you are getting relief and it has not given you any side effects as yet. It takes 2-4 weeks to reach an optimum level in your body.

That is great news!! :) yaaay!!

If it is just a wonky spasming GI tract, in time, you will not need it. yaaay again! :D

When you do go off it, please, ramp down slowly.

Cold turkey w/d is not a good idea.

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If it is just a wonky spasming GI tract, in time, you will not need it. yaaay again! :D

When you do go off it, please, ramp down slowly.

Cold turkey w/d is not a good idea.

Yep, she even mentioned that as my body sorts itself out it would very likely become unnecessary in time.

As for discontinuation syndrome...had that experience when a doctor here in Poland tapered me off an anxiety med (prescribed prior to Celiac diagnosis when they were all telling me it was all "in my head" and there wasn't anything actually wrong with me!) too quickly. That was a miserable month of tremors, insomnia, crankiness, headaches, etc. Never doing it that way again!

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Yep, she even mentioned that as my body sorts itself out it would very likely become unnecessary in time.

As for discontinuation syndrome...had that experience when a doctor here in Poland tapered me off an anxiety med (prescribed prior to Celiac diagnosis when they were all telling me it was all "in my head" and there wasn't anything actually wrong with me!) too quickly. That was a miserable month of tremors, insomnia, crankiness, headaches, etc. Never doing it that way again!

YUP! Same here!!! coming off the amitryptilline without guidance.

I had it when I stopped Ambien years ago too. And I had only tried it for 5 days!

yes, all of this was just "in our heads" Babs. :rolleyes:

idiots!

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My six year old had two positive blood tests, and one negative one... no endoscopy... symptoms come and go... father says I am over reacting, sued for aole medical custody, had two lawyers, doctors on his side, threw a lot of money at it. Now I can not even get her care....

I have had the same symptoms all my life... not eating gluten makes me feel fine...no one believes me... I was accused of taking her to the doctor "more than usual." I can not afford a lawyer... :'(

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When you say she has had two positive tests and one negative one, can you explain what tests she had and when, and what the results and ranges were? Just so we know what we are discussing here :)

And by the way, welcome to the forum.

A further suggestion - this would be better discussed if you started a separate thread of your own entitled something like "Child custody battle because of food intolerance issues". It would get separate attention from our posters rather than buried in someone else's thread :)

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A further suggestion - this would be better discussed if you started a separate thread of your own entitled something like "Child custody battle because of food intolerance issues". It would get separate attention from our posters rather than buried in someone else's thread :)

This is a good idea, Shroomie!!!

Others have been in your shoes, hon and may offer you some good advice.

Sorry :( I can only imagine your frustration and sadness while trying to protect your child.

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My daughter has this same type of pain, varies from nagging to severe, upper left side but occasionally affects the right side. We have been at a loss too. She has been gluten-free for a year, and was asymptomatic at the time of dx. Stomach pain came AFTER she went gluten-free. Go figure. So, no answers, but she does get a lot of relief by drinking a teaspoon of Braggs apple cider vinegar in water. Wish I had an answer though! Looking at other food intolerances for her too, but so far, have found nothing that stands out.

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I am completely new to celiac and gluten free diet (3 months) but shortly after I recovered from my initial adjustment symptoms, I started having pain exactly as you describe. This pain is different from being glutened for me too because I don't get the other symptoms along with it. I finally connected it to rice and quit eating it. I still have rice flour in products I buy because I am overwhelmed enough by all the changes but I don't seem to have the same pain, just when I was eating either white rice or, especially, brown rice. Maybe it IS the brand because it was stuff I had in the house from before celiac diagnosis and the gluten free products I have been buying are safer? I don't know but I someday I might be brave enough to try another brand.

I am sorry you are feeling so badly and I hope you find relief soon.

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