Frustrated

[nire]

i am new to this board and have found reading about other's experiences helpful.

for the past four years, i have had terrible constipation, bloating, and gas for which i saw a gastroenterologist and an acupuncturist. i have been treated with miralax, senna tea, and a brief stint on a wheat free diet at the urging of acupuncturist.

about two years ago, i started developing more systemic symptoms- itchiness, sores in my mouth, sore joints and muscles, extreme lethargy, irritation, and dizziness. however, these symptoms come and go and do not seem to be consistnetly tied to what i eat. i still have terrible constipationa and gas, i mean embarrassing. my poor boyfriend.

anyway, went to gp who said she thought it sounded like celiac, but ALL my bloodwork came back normal- including iron and vitamin d.

i was wondering if i should just try a gluten free diet and see if my symptoms disappear. but i am not sure this is even what i have given the inconsistency and non specificity of my symptoms, especially since my blood work is negative. can you have gluten intolerance with negative blood work and not have these symptoms immediately after you eat gluten?

[Corkdarrr]

The general consensus around here is that bloodwork doesn't mean anything.

Try the diet and see how you feel. That should be all the proof you need!

Good luck and welcome!

-Courtney

[jerseyangel]

Hi Nire, welcome to the board

Hard to say, but since no test is 100% accurate, and in Celiac testing, there seems to be more room for error, I think you have nothing to lose by trying the gluten-free diet.

Make sure that you do it 100%--that's the only way it will work.. Give it 6 months, and see if it makes a difference. We have many people here on this board who test negative, but know that they have a problem with gluten. You'll hear from some of them soon, I'm sure.

Look at everything you put into your mouth--foods, medications, vitamins. Products like toothpaste, mouthwash, shampoo, conditioner, hair styling products, make up, lotions, etc. Anything you get on you hands, can wind up in your mouth!

Go through your kitchen and replace any wood cutting boards and utensils. Also replace your collander and toaster and any scratched non-stick cookware. Keep your foods separate from foods containing gluten--think crumbs!

Be careful when eating out, ask questions and be specific about your needs. Speak to the manager, if at all possible.

Read labels, and when in doubt, don't chance it.

Keep reading here--there is a ton of great information and tips on the gluten-free lifestyle.

[Ursa Major]

Hi Nire, and welcome to this board. Actually, if bloodwork comes back positive, it DOES mean something, as there are false negatives, but no false positives.

That said, for some people the bloodwork will come back negative, even though their villi are virtually destroyed. And iron deficiency and low vitamin D levels are POSSIBLE symptoms of celiac disease, but since there are over 200 symptoms, not everybody gets all of them.

You sure sound like you may have celiac disease. Just trying the gluten-free diet is a very reasonable thing to try. Especially since it can't do any harm, as it is a healthy diet.

Also, if you have celiac disease (or even 'just' gluten intolerance), a wheat-free diet isnt good enough. Gluten free means wheat, rye, barley and oat free.

I hope you will try it, you have nothing to lose! I did, and I am very glad I made that decision, it's changed my life for the better.

I had EVERY one of your symptoms, including the awful joint pain, dizziness, gas, bloating etc. The only one that is still remaining is the terrible exhaustion. And that is being addressed now, it is adrenal fatigue (caused by stress, both physically and emotionally, and celiac disease can cause it).

I get (and so do other people) very delayed reactions to foods I am intolerant to. Now that I've been gluten-free for a few months, I don't get diarrhea from a glutening for a whole week! Some symptoms take an hour, others show up the next day, and as I said, some don't come for a week, and then last a few days after that.

[CarlaB]

Welcome to the board!

I was on "gluten-lite" for my blood test and it came out negative. I thought I wasn't eating any gluten at the time, but I learned on this board how many foods/products have gluten that I never knew about! My biopsy was also negative. I tested with Enterolab, and it's more sensitive tests showed I have gluten intolerance.

I feel much better on a gluten-free diet and get very sick when I even get a small amount of gluten in my food. I didn't really notice a correlation between my symptoms and my diet until I was off gluten and would accidentally eat it.

Dietary response is the best test, IMO. If you need to see something on paper, you can use Enterolab.

[Chris E]

Hi Nire, and welcome to this board. Actually, if bloodwork comes back positive, it DOES mean something, as there are false negatives, but no false positives.

That said, for some people the bloodwork will come back negative, even though their villi are virtually destroyed. And iron deficiency and low vitamin D levels are POSSIBLE symptoms of celiac disease, but since there are over 200 symptoms, not everybody gets all of them.

You sure sound like you may have celiac disease. Just trying the gluten-free diet is a very reasonable thing to try. Especially since it can't do any harm, as it is a healthy diet.

Also, if you have celiac disease (or even 'just' gluten intolerance), a wheat-free diet isnt good enough. Gluten free means wheat, rye, barley and oat free.

I hope you will try it, you have nothing to lose! I did, and I am very glad I made that decision, it's changed my life for the better.

I had EVERY one of your symptoms, including the awful joint pain, dizziness, gas, bloating etc. The only one that is still remaining is the terrible exhaustion. And that is being addressed now, it is adrenal fatigue (caused by stress, both physically and emotionally, and celiac disease can cause it).

I get (and so do other people) very delayed reactions to foods I am intolerant to. Now that I've been gluten-free for a few months, I don't get diarrhea from a glutening for a whole week! Some symptoms take an hour, others show up the next day, and as I said, some don't come for a week, and then last a few days after that.

hey! you say there are over 200 symptoms? is there a list of all of these symptoms somewhere becasue every list i look at has no where near 200 symptoms.

thanks

Chris

[nire]

thanks for all the replies! the whole doet changing thing is stressing me out, because i love to eat and i don't have a lot of time to cook, so i will have to be more dilligent. but i am willing to do anything to feel better.

[jerseyangel]

hey! you say there are over 200 symptoms? is there a list of all of these symptoms somewhere becasue every list i look at has no where near 200 symptoms.

thanks

Chris

In the back of the book "Dangerous Grains" is the longest list of symptoms I've found to date.

[Looking for answers]

Hi,

I was in your shoes a short while ago, and had a hard time (physical withdrawels even!) giving up some foods, but now I'm so happy to be gluten and dairy free! You would benefit greatly from reading the book "The Diet Cure" by Julia Ross. She suggests supplements to help with cravings, and also provide a whole host of information to food allergies. It truly helped me.

Best of luck!

[Matilda]

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