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I Was Never Tested

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Posted 15 January 2013 - 08:57 AM

My doctor, despite asking him to test me first, told me to go off gluten but as I mentioned did not test me. I have been off gluten for three months now. I finally feel better this month. I no longer lay in bed all day, have night sweats, severe bloating, as much chronic gas, my joints hurt less, my anxiety has improved, I have longer weird sensations in my arms, I have no more leg pain, etc.

I know that going off of gluten has made me feel wonderful and I am terrified of getting tested because I know I would have to go back on gluten and feel horrible again. However, part of me wants to know for sure. If you were in my position, would you go back on gluten to get tested, or just permanently stay off of it? I wanted to get pregnant in the next two months (I guess I can wait), so that is also part of my dilemma, to get tested or not?

Also, (not all my symptoms are gone) as in I still have gas, just not quite as severe and embarrassing and just this month I have developed horrible acne, mostly on my forehead (I'm 25). Any ideas for why?
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Posted 15 January 2013 - 11:38 AM

Wait just a minute please... BANG! BANG! BANG! There, I have finished banging my head against the wall :lol: That feels better. Why, oh why, do they continue to do this to their patients??? And you even told him he should test first. I guess it's because it is not their bodies they are messing up :blink: They don't have to do the challenge if they want a diagnosis :rolleyes: No, you, the patient, are the one who suffers, not them.

Welcome to the boards, and I am so sorry this has happened to you too.

So what do you do about it now? I suppose it ultimately depends on 1. how much punishment you can handle, and 2. how badly you want the diagnosis. Speaking for myself, there was no way any more gluten was coming into my life if I could possibly help it. It was obvious I was not going to eat it again regardless of the diagnosis because I felt so much better (I went gluten free on my own because I had not learned about celiac). But then, the diagnosis was just not important to me; it may be to you to keep your motivation going - we are all different this way.

You are wise if you are planning a pregnancy to wait a while until your body has a chance to recover; this does not happen overnight and there's no way of predicting. It mainly depends on how long you have been suffering and how badly damaged your small intestine was, assuming it is celiac and there was damage, and that is certainly a reasonable assumption given the relief you have felt.

Three months is really not very long in the scheme of things for healing, although certainly long enough to feel benefits. Since celiac is a disease of malabsorption which leads to our symptoms, you first have to heal the small intestine before you can start absorbing the nutrients your body needs. And this will take longer or shorter depending on how deficient you are. The next thing you should ask this genius of a doctor, and do not take no for an answer (and if you can find a better doctor, even better!) is to test your vitamin and mineral levels to find out if and where you are deficient. As in vitamins A, B's - especially B12 and folate - C, D, E and K, iron/ferritin, zinc, magnesium, potassium. Also please run the thyroid tests, TSH, FT3 and FT4, and TPO AB's. You will need supplements for anything you are deficient in. Once you have built your levels back up you will be ready to make a healthy baby.

As for, "not all my symptoms are gone", that is not at all unusual. It does take a while for everything to settle down. You can speed up the process by taking a good probiotic to promote good bacteria in the gut, and many people find digestive enzymes helpful as gluten tends to suppress the ability of the pancreas to put out the right amount of enzymes. You can also do a trial of no dairy (or at the very least no lactose - like milk, ice cream, etc., which are high in lactose) because if you have intestinal damage your ability to digest lactose will have been impaired. Or you can try taking Lactaid tablets or milk. However, milk is very easy to avoid with the options of almond, hemp, etc. Maybe avoid Rice Dream and soy milk to start with. See if that makes a difference to your gas and bloating.

I developed acne, having never experienced it in my life, after giving up gluten also. For me, my acne was in response to two specific tood intolerances. Have you been eating a lot of something that you hadn't eaten (much of) before? Just a thought.

I hope others will offer their perspectives on your dilemma, and wish you the best in your decision-making :) Feel free to ask any other questions.
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Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

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Posted 15 January 2013 - 01:28 PM

I actually found a new doctor that I am going to this week. I decided against going back to that doctor. He insisted that I must have mold or Lyme disease and had me run a myriad of tests, which I did not agree with and knew I did not have (but I guess I'm a sucker; I don't like to say no). It's been a month and a half, I've been insisting they tell me my results (I've asked kindly four times) but they are very weird and uncooperative. A month before that he insisted I had low thyroid, which I did not have. But even so, as I tried to tell him before, I know my problems are food intolerances, not anything else, and being tested would show that. But I suppose as a doctor he tried his best. I also have chronic fatigue and fibromyalgia (runs in the family, but nobody has discovered why).

I don't want to do the gluten challenge, but I just wasn't sure if I should. I.e. especially to know how much damage it causes me. One thing I was tested for and know is that I have low vitamin b levels.

As for dairy, I do not drink milk and have not for years. I drink almond milk, however I am a sucker for cheese. I love cheese probably a little too much. As for eating different things, I think the only difference is some of the gluten free flours. Mostly I only make things with whole grains. Beforehand, I never had millet, tapioca, or sorghum. Is there a test for casein? I don't know why my acne in particular has gotten so much worse, perhaps it is dairy? I take a digestive supplement called digestaway by Soloray, not sure if there is a better one?

Most of my life I have felt exhausted, and I remember as a child always being bloated. And I just hate to feel that way again. I don't feel as good as the normal person, but to me and what I am used to I feel 95% better.
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Posted 15 January 2013 - 02:49 PM

Sorry, you have suffered. I know I could not eat gluten again, but my MD did use my genetic test along with my observations after beginning the gluten free diet. She also used her own powers of observation eyeing my "five months pregnant" looking belly. I think for you the changes you saw are quite a bit of proof.

Other proof I use for myself are:

Failure to get enough nutrients inspite of a careful diet high in nutrients.
Now, I get diarreah when I make a boo boo. You too will notice a reaction perhaps bloating, or something if you eat gluten accidentally.

All of these tend to be a deterrent even if you are not officially dignosed.

I hope you will get a definate diagnosis somehow, but most of all that you will feel healthy and strong in all ways.

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Posted 15 January 2013 - 10:45 PM

Hi, I was never tested either, but as stated previously, our bodies "feedback" is proof enough! I don't know that I could go back on gluten purposely either. I feel for you though. This can be a tough place to be.I've only been gluten-free for about 8 months, but I have already had great improvements. I am in complete agreement with Shroom,& good thing you found a new doc! I'm glad this forum is here!
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Posted 16 January 2013 - 06:57 AM

. I also have chronic fatigue and fibromyalgia (runs in the family, but nobody has discovered why).

These ailments may also resolve off gluten. If others in your family have these symptoms, I suspect they also have gluten intolerance issues.

So many celiacs are told they have "Fibro" (I heard that word too) IMHO, this becomes a catch-all wastebasket dead-end diagnosis when the doctors do not know why someone has muscle and joint pain, "IBS" and fatigue.

I found it hard to believe that was what I had --since I was also losing my hair, suffered a massive weight loss, loss of muscle mass and essentially, slowly dying from celiac-- and I know that so many women on here report a miraculous resolution of their "Fibro "when off gluten.
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Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
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