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chocolatelover

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chocolatelover Contributor
chocolatelover
Posted

After reading many, many posts over the past several weeks and spending many hours doing research online, I decided that it's finally time to start asking you all some tough questions. I've been having intestinal issues for many years and never really did anything about it--just thought it was "rich" food or something unrelated. I also never really sat down and thought about my other symptoms and connected it all, until now. I'm hoping someone can help shed some light for me...

My laundry list of symptoms include: diarrhea, floating greasy stools, gas, bloating, canker sores, irritability, depression, lightheadedness when I stand up (almost always), tingling in my legs (thought it was restless leg syndrome, but could it be related to the other symptoms?), ringing in my ears, insomnia...

I've had 6 tubes of blood drawn, all of the results have come back "normal". I'm still waiting for the results of the celiac specific bloodwork (it's been almost 2 weeks and can't get the dr's office to return my calls with results) and am scheduled for a colonoscopy on Wednesday (though I think what I need is an endoscopy instead). I had a 24 hour fecal fat test, with what I consider to be borderline results. Anyone ever had one of these? My number was 6.5, some say normal is <7, some say normal is <6. So does my number mean anything, or would it be higher if it was really a problem?

In September I started a weight loss program--eating much less, eating low carb (almost none), low fat, lots of veggies, and exercising a lot. I've lost about 40 lbs and was really hoping the diarrhea, etc. would stop. It didn't, so right before Christmas I went to my regular dr. They had me go off dairy and then dairy and gluten completely--it was nearly impossible for me to do both, but I did feel better. They did a general allergy test and it showed I was not allergic to anything and sent me to a GI.

Is it possible that I didn't have enough gluten in my system to show in the bloodwork? I am now eating as much gluten as I can in case they decide I should have an endoscopy.

I feel like my biggest obstacle right now is the GI--from the minute I walked into her office, she said "IBS", so now I feel like I have a real uphill battle getting her away from that dx. I just don't feel like my symptoms match IBS (I also think it's a bogus diagnosis). I'm so frustrated I just want to sit down and cry. How do I get her away from this line of thinking?

I would so appreciate any insight anyone has to offer...I'm considering the Enterolab route, but I am very skeptical. The money would be a stretch, but I would do it if I need to...

Help! :(

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Corkdarrr Enthusiast
Corkdarrr
Posted

Well...in terms of some of the more specific tests, I don't know what to tell you.

My GP did the bloodwork after I requested it, but by then I'd already been gluten-free for several weeks. It came back negative, which it probably would've anyways. After reading a lot on this board, I have very little faith in the medical profession's ability to diagnose. So I went gluten-free on my own and *voila!* I felt 100x better.

I later ponied up the cash for the Enterolab test just for my own peace of mind and almost as a test for new doctors. Anyone open and willing enough to consider the Enterolab results valid was probably competent enough to treat me.

Anyways, all your symptoms sound very Celiac. I have never been labeled IBS because my stomach hurt so bad for so long, I thought it was normal. So normal that I never even thought to go to the doctor for it! My brother was dx IBS, and I know a lot of people on here have been, too. In my opinion it seems like a 'catch-all' for mystery digestive problems.

It is very possible you didn't have enough gluten in your bloodstream for the test - someone will jump in soon who knows the exact facts for all that stuff.

If I had the option to do all the tests which were already scheduled and paid for, I suppose I'd go ahead and follow through. It can never hurt in case of ruling out something weird and completely unexpected. But since I have awful insurance, I just tried the diet on my own and have selx-dx myself with gluten intolerance.

Also, be patient. It can take some people a long time to begin feeling better. A lot of peopel seem to have the experience I did - which was the first week was like night and day, it was SUCH a huge and wonderful difference. But then it got worse again.

So, the biggest advice is to be patient. Ask questions. There is a HUGE learning curve with cutting out gluten. And remember that's what we're here for!

And welcome to the board!

Courtney

SpikeMoore Apprentice
SpikeMoore
Posted

Hi

Reading your post sounds like many of us here. I guess you have to decide how important an official diagnosis is to you. I stopped at hearing "your blood test was negative, therefore you do not have celiac". I felt like an idiot for bothering the doc in the first place. But reading here, only positive tests mean something. So, I don't care, the proof to me is in the overwhelming circumstantial evidence.

You probably saw the poll about how many people were officially diagnosed vs self and it was amazing that approximately 60% of people here do not have an official diagnosis. Me included...but I feel better!

chocolatelover Contributor
chocolatelover
Posted
  • Author

Wow, I guess I didn't realize just how many people are affected by gluten and aren't "officially" diagnosed. I'm lucky that I have good insurance, so my incliniation is to keep testing for now as long as they'll pay for it, then go the Enterolab route to see for sure. I'd like to know if I have the genes...I have 3 kids, 2 of whom I suspect may be celiac/gluten intolerant as well. One of the most interesting symptoms they have is brown staining on their teeth, and no dentist can ever figure out why. I'm starting to wonder if there is a connection...

Courtney...you sound just like me. I've had diarrhea for months and months. After a while you feel like it's just your body's normal state. I finally decided that it isn't normal, and it was time to do something about it.

I so appreciate the support...thanks! This is a great place to be able to discuss/vent/wonder aloud...I'll let you know what happens!

:)

CMCM Rising Star
CMCM
Posted

I suggest you go over to Amazon and order the book "Dangerous Grains"...about $10. You will then understand what gluten does to people and why it's GOOD to never eat it. I have just recently read a newly released book on Celiac disease, and it mentioned that it is now thought that perhaps 80% of Americans are gluten sensitive...to varying degrees. Celiac disease is more and more being considered an extreme subset of the broad spectrum of gluten sensitivity. In other words, while many people can be gluten sensitive and have all the same uncomfortable and varied symptoms that can occur with celiac disease itself, just a small subset of these people have the predisposing celiac gene which CAN (but not always) get triggered at some point in a person's life and propel the body into full blown celiac disease with all the autoimmune ramifications and dangers. For others, the celiac gene may never get triggered but they still react to gluten...sometimes very strongly and thus get and stay very ill from eating it. People with the gluten sensitivity gene but NOT the celiac gene may also get and stay very sick from eating gluten, but will not get celiac disease. PLUS...to further complicate things, there have been people with celiac disease who do NOT have any of the known predisposing genes. And finally, there are people with predisposing genes who never get sick or react at all.

If you have symptoms, you are correct to be suspicious. Whether you have celiac disease OR just gluten sensitivity, you should NOT eat gluten, plain and simple.

I think "Dangerous Grains" should be elementary reading for everyone who wants to understand this subject...and it's very "user friendly" and readable for non medical people. In the back of the book is an index of over 200 symptoms which are linked to celiac/gluten sensitvity.

chocolatelover Contributor
chocolatelover
Posted
  • Author

Thanks, Carole. It sounds like a good read--definitely something we should all consider as a resource.

Nancym Enthusiast
Nancym
Posted

The test is a endoscopy for celiac, not a colonoscopy. There are cases of people having negative bloodwork but positive biopsy so if you do decide to go for traditional testing, don't let them put you off on negative bloodwork. Just remember to keep eating the gluten (and lots of it) until you're done testing.

And no matter the results, try the diet anyway.

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chocolatelover Contributor
chocolatelover
Posted
  • Author

I know--I asked about an endoscopy and she said no, she wanted to do a colonoscopy first. Like I mentioned, she's stuck on the IBS dx. I've called them 3 times since the middle of last week to get results for the celiac bloodwork and I can't get anyone to call me back or give me any information about it. I'm very frustrated with this practice. I'm thinking I may have to go somewhere else. In the meantime I'm eating as much gluten as I can muster! Thanks Nancym!

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      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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