Diddo On The Neg Test Results

[Sandyo]

I will try to make this as short as I can...but would like some feedback. Both Doctor's I went to are telling me I do not show symptoms of gluten intolerance or Celiac Sprue and my blood test (5 anitbodies) came back neg. I don't know the numbers, the Doc said two are a little "high" but not enough for intolerance or Celiac.

I've been lactose intolerant for 6 years, hit me all of a sudden. My mother is allergic to many meds, milk, wheat, corn and soy. Has always had problems with foods. My sister is now having the exact same symptoms as I am.

Started 2 months ago. Nausia after eating, stomach cramps, bloating, excessive gas, hard extended stomach, gained 8 pounds can't get off even with running 25 miles a week and lifting weights, dull headaches, sharp pain right rib cage, constipation for years (when I do go they are hard, and very dark, usually little tiny balls and I have to strain a lot) even though taking 3 stool softners a day and one with laxative, had a migrain the other day (haven't had one for years), body aches, floating stools, feels like my heart is beating funny sometimes, rash that comes back after taking everything including acutane (not itchy or red but not like acne, Dermatologic is stumped, did a biopsy last week), bruise very easily, and sick twice within the month, stomach ache (threw up) and a cold for 5 days (and I'm never sick...I mean NEVER sick), don't sleep well but always tired.

I thought for sure I knew what was wrong. I went off gluten for 3 days and felt better then had to eat some for the blood test. Ate some for 3 days before the blood test so I think that was enough. I've been gluten free for about a week now and feeling better and I ate Frosted Flakes this morning (though I saw they were ok) and am not feeling well today.

My questions are: Does it sound like I'm gluten intolerant? Is being intolerant not as dangerous as having Celiac disease? And could it be that I just need to limit my gluten? Or is it all or nothing?

Thank you for your comments.

[wolfie]

Sorry you aren't feeling well. It is an all or nothing thing...if you are gluten intolerant, only a gluten-free diet will help you feel better. Same with Celiac....life long adherance to a gluten-free diet. To my knowledge Frosted Flakes are not gluten-free. You can still have gluten intolerance and/or Celiac with negative blood work. If the diet makes you feel better, stay on it.

Hope you feel better soon!

[jerseyangel]

Sounds like you are gluten intolerant to me. The tests that the doctor said were a 'little high' is a bit suspicious. We hear stories all the time where a doctor is reluctant to diagnose Celiac. All of your symptoms point to it. You may have even skewed the blood tests by going off gluten beforehand. The big tip-off, though is the positive response to the gluten free diet. That should tell you all you need to know. (I don't believe Frosted Flakes are gluten-free). The difference between Celiac and gluten intolerance is that in Celiac, there is proof of flattened villi in the small intestine. The treatment for both conditions is the same--100% gluten-free. It really is important to be 100% with it--you won't gain a thing by going light on the gluten. Yep--all or nothing

[Sandyo]

Sounds like you are gluten intolerant to me. The tests that the doctor said were a 'little high' is a bit suspicious. We hear stories all the time where a doctor is reluctant to diagnose Celiac. All of your symptoms point to it. You may have even skewed the blood tests by going off gluten beforehand. The big tip-off, though is the positive response to the gluten free diet. That should tell you all you need to know. (I don't believe Frosted Flakes are gluten-free). The difference between Celiac and gluten intolerance is that in Celiac, there is proof of flattened villi in the small intestine. The treatment for both conditions is the same--100% gluten-free. It really is important to be 100% with it--you won't gain a thing by going light on the gluten. Yep--all or nothing

Yes, I thought that "alittle high" was a bit odd. Am I allowed to get a copy of the blood test? Will the doctor's office make me a copy if I ask?

[jerseyangel]

Yes--by all means tell them you would like a copy. (notice I didn't say ask them for a copy)

[ravenwoodglass]

Yes, I thought that "alittle high" was a bit odd. Am I allowed to get a copy of the blood test? Will the doctor's office make me a copy if I ask?

It's kind of like being a little bit pregnant

Yes the doctors office will give you a copy, you have a legal right to them but some will charge you a copy fee.

[Sandyo]

It's kind of like being a little bit pregnant

Yes the doctors office will give you a copy, you have a legal right to them but some will charge you a copy fee.

Is it either high or not high or are there levels like Colesteral testing?

Thanks, I will get a copy tomorrow. My one doctor wouldn't even test me. He said go off gluten and if your symptoms go away then I'll test you. After reading just a few posts, I realized he had not idea what he was talking about.

Thanks for your help!!!

[DonnaD]

Do get copies of your test results. My doctor told me many of mine were fine and they actually were boarderline. I did Enterolab because I had been 95% gluten-free for ages (thanks to all here for the advice). My little girl told me the other day that I know far more than any doctor about these problems, ( I don't I'm still learning but it is nice to be appreciated LOL ) she is 11 and has gained 6lbs and 2" height on the gluten-free diet. I have had to buy her a whole new wardrobe in age 9/10 (she was in age 8) its so exciting to see her getting some colour in her cheeks and energy to do things other kids take for granted. All I can say is 'don't get mad, get even'. get all your test results and look them up online or post them here. Western medicine is geared towards poisons (antibiotics) etc and we need to learn from traditional medical systems ( i.e. chinese) to balance our diet/systems. I'm 42 and only just finding out why my health sucks, i'v seen 30+ doctors, 5+ consultants, 5+ physio therapists, 1 chiropractor, 1 oestopath. 1 irridologist (best £40 I ever spent), 1 traditional chinese doctor. The most important thing I ever did for my health was ask questions here and listen to/research the answers.

Good luck

D