I Really Need Your Advice! Negative Test Results But All The Symptoms Match.

[blw]

Hi, I'm a 26 year old female experiencing so many celiac disease symptoms (and have been for as long as I can remember) but have had negative/inconclusive blood, saliva and stool test results. I'd REALLY appreciate your advice, this is all so new to me and I want so badly to find out what is going on.

My testing history:

1. Saliva/stool testing - high negative results (8 with >15 being a positive result) but with a very depressed immune system (38, with a normal range listed as between 400-880), and was told I could have celiac disease.

2. Blood test after cutting back on, but not stopping eating, gluten, was negative, was told by another doctor I did not have celiac disease/significant intolerance. Confusion...

My symptoms are:

- lower abdominal pain and cramping, and gas (after what seems like every meal since I was little), stomach sometimes sticks REALLY far out

- severe fatigue after eating anything, but wheat was always the worst

- maybe 15 or so cavities in my life despite taking care of my teeth (I heard this was possibly related)

- hypoglycemia/major mood swings after a few hours without eating

- anxiety and hard to think straight a lot of the time, depressed sometimes

- leg cramps every morning and headaches are common

- increasingly losing weight, 5'8" and went from 130 lbs to 120 a few years ago and then to 110 last year, having trouble gaining weight despite eating more fat/protein

- severe period cramps for 5 years, then no periods for the last 6

- hair thinning, dry skin, no sex drive the last several years

- stomach trouble after dairy

- autoimmune issues - Raynaud's symdrome

- family autoimmune issues - my mom has lupus

I tried to completely cut out gluten two weeks ago and have since had two accidental encounters, with stomach trouble sooo much worse after these than ever before. I'm trying to figure out where to go from here. I'm scared to start eating gluten again in an attempt to get a positive test result if it's at all the cause of these symptoms. The thought of starting on a whole new way of eating for the REST OF MY LIFE without conclusive results is daunting too. What would you do? Any advice? Thanks so much!

[Kay DH]

Only about 3% of people that have celiac are diagnosed with it. The 97% were not tested, or the tests were negative. Even if a person does not have celiac they can still have an immune response to gluten, or gluten sensitivity. Your symptoms are very similar to celiac symptoms. My symptoms started more than a year ago, after getting the flu. I've been gluten-free for 13 months. I was gluten-free for 2 months before my blood test, which was negative for the celiac-associated antibodies (IgA, IgG) and slightly elevated in other autoimmune antibodies. My endoscopy was 6 months gluten-free and the GI only had me on the gluten challenge for a week and did 1 biopsy, which was negative (he thought I had diverticulitis instead, which was very negative). So, I don't have a diagnosis of celiac, but I do know that I get sick from even minor cc, and my health is now as good or better than before I got sick. I'm also more sensitive to gluten than before I went gluten-free.

So,sometimes you just have to trust your body more than the (lack of)diagnosis and results. The most basic test is if you feel better off gluten, and you get sick when you ingest it. There is also the possibility of other intolerances, such as dairy. Initially going gluten-free is a big life change, but it is a change for the better and in time it does become automatic. There is a bit of grieving process in the beginning. It is also initially frustrating because of all the places these nasty molecules hide, and learning to question if the food you are served is safe. My cc risk has dropped through time. Best wishes for a great New Year for you, and for resolution of your symptoms.

[blw]

Thanks so much, it's nice to hear you had a similar experience but made some changes anyway and improved. I have a hard time trusting myself without a doctor to back me up, but I'm too excited about the idea of solving all this and just need to go with my gut, haha. The change could be kind of fun I suppose, new recipes, etc.

[Takala]

I had so many other things go wrong with me during my life where I was either blown off or misdiagnosed, that it doesn't bother me to not have the "official diagnosis by testing" by the time it got to where it was severely neurological.

Current PCP accepts self diagnosed status (around 7th year, approaching 8th) because I told him that he(( would freeze over before I entertained thought of eating gluten again. That and I am obviously much dramatically better off of it, and it's a handy explanation for those little holes in my brain that I had. I studied what diseases where related, and what ethnic groups were more likely to get them, trying to figure out the arthritis part. Celiac was one of them.

My hair grew back in a lot thicker, too. But I was most relieved to get rid of the chronic kidney problems I had been plagued with, and I have vastly improved balance/coordination.

[rosetapper23]

Okay, you KNOW you have a gluten problem, since you get sick when you eat it. In my opinion, both the tests for celiac/sensitivity and doctors are oftentimes wrong....or, in some cases, nearly always wrong. I lost my confidence in doctors many years ago after being misdiagnosed since birth. For Pete's sake--I was born with Ricketts! Even then, the doctors had no idea I had celiac. Forget the tests and go with your gut on this--you won't be sorry. After you've been on a very strict gluten-free diet for a while, you'll have your answer when you eat even a smidgeon of gluten--you'll probably feel so ill, you'll never touch the stuff again.

[mommida]

I agree with the other posts. A gluten free diet has been shown to improve the health of other auto-immune disease sufferers. Please get your thyroid checked, because medication may be needed.

[possiblyglutensensitive]

i already got checked for thyroid, it was normal.

thanks everyone.

I don't want to get tested for celiac or gluten intolerance though... just want to go gluten free.

I just don't have the motivation to do it.

[possiblyglutensensitive]

Okay, you KNOW you have a gluten problem, since you get sick when you eat it. In my opinion, both the tests for celiac/sensitivity and doctors are oftentimes wrong....or, in some cases, nearly always wrong. I lost my confidence in doctors many years ago after being misdiagnosed since birth. For Pete's sake--I was born with Ricketts! Even then, the doctors had no idea I had celiac. Forget the tests and go with your gut on this--you won't be sorry. After you've been on a very strict gluten-free diet for a while, you'll have your answer when you eat even a smidgeon of gluten--you'll probably feel so ill, you'll never touch the stuff again.

Thank you!

I just need to find the inner strength to do it.

especially that my mother laughed at me when I told her i was going gluten free...

all my life I have had issues and I am just looking for a solution. yey she looked at me like I was a buffoon. ya no wonder I am tryign stuff... i am looking for a solution!

I feel that a medical paper would give me some credibility. Or i could jjust outright lie. I never lie but if I need to so that people will respect my decision to go gluten free, then i will.

[possiblyglutensensitive]

oops sorry I replied in the wrong thread... i thought it was mine

[rosetapper23]

I see no reason to lie--you can't eat gluten because it makes you sick. Period. One study showed that nearly 30% of Americans are sensitive to gluten. You have plenty of company...but they just don't know it. Your mother needs to be educated on this topic, and I wouldn't be surprised to learn down the road that she finally discovered that she, too, is sensitive to gluten--and she'll thank you!

Gluten sensitivity isn't tested for, so there can be no paper to present. Your mother, relatives, and friends will just have to come to grips with the reality of your situation. GLUTEN MAKES YOU SICK! What else do they need to know?

Good luck--over time and with your consistent avoidance of gluten, others will see that your health has so much improved, they won't laugh anymore.