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Celiac Re-Testing (Long)

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Today I was my GI doctor for the first time since my endoscopy in August of 2010. Last year I was having a lot of bloating and abdominal pain and was tested for Celiac. The basic blood tests came back negative and the more in-depth test came back indicating that something was off. My immunogolbulin (sp?) levels were low though I don't know the exact scores. Last August he did an endoscopy on me which came back negative, though I had some polyps which he said was odd. He said, regarding the endoscopy results for Celiac, that it could mean one of three things:

1. I don't have Celiac.

2. I have Celiac and either no noticeable damage has been done or damage had been done further down, beyond the scope of the endoscope.

3. I have non-Celiac gluten intolerance/sensitivity.

He said to go gluten free for a month and see how I feel. He also said I might be lactose sensitive. I tried to go gluten free but was unable to do so for several different reasons. He diagnosed with with IBS which is a fancy way of saying they have no idea what is going on.

For the past year I haven't really had bloating or abdominal pain but I have been having constant joint pain and fatigue. I have no diagnosis but I suspect FM/CFS (Fibromyalgaia (sp?) and Chronic Fatigue Syndrome). My GP thought the fatigue was due to Hypoglycemia and so I decided to see my GI doctor. He mentioned something about my chronic fatigue, but I'm very confused. Last year he told me to go gluten free and said that I might be sensitive to it, but today he told me there is no need to go gluten free and that I probably am not sensitive. He told me to exercise, but with the joint pain I have I worry exercise might make it worse.

Tomorrow I have an endoscopy and blood work scheduled to check on things, but I'm just confused that today my doctor told me the exact opposite of what he told me last year. He also said that the joint pain and fatigue aren't related, but I have been told that many people with gluten allergies or intolerance/sensitivity have joint pain and fatigue.

So I have a couple of questions:

1. If nothing comes of the tests tomorrow, would it be wrong of me to still try going totally gluten free?

2. Is there anything else that would cause low Ig levels but isn't gluten related?

3. Has anybody experienced joint pain/fatigue or been diagnosed with FM/CFS as well as a gluten allergy/intolerance/sensitivity?

4. Are there specific tests for intolerances/sensitivities rather than allergies only?

5. I also have acne that won't for the life of me go away. Most people lose their acne around 20. I am 21 and still have it. Various doctors have given me so many different creams, pills, and face washes and nothing has made any difference. I bring it up to doctors and they tell me not to worry and that I'll grow out of it. They say it's not that bad, but I have the worst acne of anybody in my family. Sometimes I get cyst type things that leave holes in my face and take weeks to clear up, not like typical acne. My doctors say it isn't digestive related, but I sometimes wonder otherwise. Is there a specific test for that skin rash that is associated with gluten issues?

I hope something useful comes of tomorrow as I have been in pain and feeling run down for the past year. But my weight has been stable and little in the way of nausea and bloating. I'm just sick of feeling horribly and now having doctors believe me or offer any useful advice:(

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Here is a list of symptoms I found. The ones I have/had are emboldened:

Abdominal cramps, gas and bloating

Anemia

Borborygmi (stomach rumbling)

Coetaneous bleeding

Diarrhea

Easy bruising

Epitasis (nose bleeding)

Failure to thrive

Fatigue or general weakness

Flatulence

Fluid retention

Foul-smelling or grayish stools that are often fatty or oily

Gastrointestinal symptoms

Gastrointestinal hemorrhage

Hematuria (red urine)

Hypocalcaemia/ hypomagnesaemia

Infertility

Iron deficiency anemia

lymphocytic gastritis

Muscle weakness

Muscle wasting

Nausea

No obvious physical symptoms (just fatigue, overall not feeling well)

Osteoporosis

Pallor (unhealthy pale appearance)

Panic Attacks

Peripheral neuropathy (nerve damage)

Stunted growth in children

Vertigo

Vitamin B12 deficiency

Vitamin D deficiency

Vitamin K deficiency

Vomiting

Voracious appetite

Weight loss

Obesity

Sleep problems

Mouth ulcers (though haven't had them for awhile)

Constipation

I'm not sure about my vitamin and mineral levels now but in the past they had always been normal. I just wanted to post this list so you all knew my symptoms and didn't think I was uninformed.

Edited: My mother also has severe endometriosis (sp?) and inflammation which, from reading the posts here, seems to be common with gluten allergies. No doctor has ever found what is causing the inflammation and no medicine has helped. Neither has massage or acupuncture. I've been wondering for the past year or so, since I suspected gluten intolerance in myself, whether she has it or not. Now I am much more certain she does as well.

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I think you should definitely try going gluten free - this will be a relatively fast way to find out one way or another how it effects you. Go off gluten - and I mean REALLY GO OFF GLUTEN (you can't cheat, if you do you are wasting your time) for at least a month - then do what we call a "gluten challenge" - and see how it effects you. If you have Celiac or gluten sensitivity it will likely make you feel AWFUL. That was my experience and it seems to be a common one. Once your system clears it all out, it reacts strongly to it when it's introduced.

This is the easiest way to get an answer. That's not to say it's EASY per se, but it may make you feel soooo much better. I had CFS for years and have finally tied my symptoms to gluten. Please give it a try.

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I agree with what Aly1 said, and about the skin / acne it sounds like it may possibly be DH (dermatitis herpetiformis). The way they test for it is to take a small biopsy sample from a clear piece of skin adjacent to a break-out or blister. I didn't have a biopsy, however I've read it's a sample about 4mm and they use a single stitch on the wound, which may leave a small scar. You'd want to see a dermatologist about it.

The 'good' news is that a diagnosis of DH is a diagnosis for celiac. I've read that DH sufferers generally have fewer of the GI issues, so an endoscopy may well be negative. If you want a diagnosis, you might want to continue to eat gluten until you've seen a dermatologist.

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Thanks:) I had my endoscopy today and it looked clear. Still have to do the blood work. After this I will try to go gluten free on my own. I'm done with constant doctors appointments.

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