Question About Symptoms

[DMcCarthy]

Hi everyone,

I am a new user and have not yet been diagnosed with Celiac disease. I am scheduled for an endoscopy (and a colonoscopy - yecch) this coming Wednesday.

To be honest, I always thought that celiac disease was one of those vague, perhaps overdiagnosed maladies; I am not trying to offend anyone here, I am just being honest about my ignorance. After reading more about the disease, I am confused by the long, sometimes conflicting list of symptoms, and I have a lot of questions.

I have had diarrhea and abdominal pain for a long time; I was diagnosed with achalasia four years ago, and had an operation to keep the valve between my esophagus and stomach open. I don't have reflux at all, but the intestinal cramping is really bad. Additionally, I have noticed hair loss, dry skin, itchiness on my legs, leg spasms, and severe arthritis symptoms (my lower legs are now bowed due to the displacement of my kneecaps). I have severe neck pain, and have been told that I need an operation to fuse three vertebrae in my neck; I don't want this done. I also get numbness and tingling on my right side, from my neck to my foot.

My questions are: Can ALL of this be related to celiac disease? If I do have it, and the symptoms are all related, will ALL of these symptoms improve after I start the gluten-free diet? And, finally, how hard is it to maintain a gluten-free diet?

Thank you for your help; I am really scared about all of this.

[rosetapper23]

I can honestly say that I was suffering from all of your symptoms (except the kneecap problem) and many others by the time I was diagnosed with celiac. In your case, please keep in mind that endoscopies sometimes result in false-negatives because the scope may not have been able to reach the affected area, the surgeon did not biopsy the affected areas, or the pathologist is not skilled enough to evaluate the biopsy. If your biopsy comes back negative, I would strongly suggest that you still go gluten free to see if some of your symptoms resolve. Generally, the cramping will go away immediately, but the other symptoms can take some time. For me, it took almost a year before the bone, joint, muscle, and tendon issues resolved, and I remained anemic for several years and had to receive intravenous iron during that time.

As for the diet, many people (and especially doctors) tend to say it's a difficult one to follow, but it's not! If you stick with natural foods (meats, dairy, vegetables, fruits, nuts, gluten-free grains, etc.), not only will you eat a healthful diet, but you won't risk contamination from gluten-free processed foods. Oftentimes, when a person starts this diet, he/she tries to accumulate as many gluten-free versions of favorite foods as possible--and they are often processed foods, because those have become the staples of the American diet. Personally, after following a purely natural diet for a few years, I no longer craved processed foods of any kind, except for bread. Recently, Udi's came out with several breads that have the taste and consistency of wheat bread, so I do buy those products. However, except for crackers and a few gluten-free sauces, I simply make everything from scratch and couldn't be happier with my diet.

Now, dining out is a different story. That's where the diet can be a little tricky. That, however, is a complicated matter, and you'd probably receive more detailed answers if you started a new thread on eating out. Many restaurants offer gluten-free menus, but you have to speak directly with the manager or the chef to ensure that the cook and server both understand your special needs. For me, the worst part of the diet is eating at potlucks and friends' homes. My personal motto is to NEVER eat food prepared by someone else, unless that person also has celiac and prepares food in a dedicated, gluten-free kitchen. Period. Luckily, my mother, son, several cousins, an uncle, and a few nieces all have celiac, so I feel safe eating at many relatives' homes. The last time I ate a dish prepared by someone else, who assured me that it was gluten free, ended in catastrophy for me. I was glutened and suffered such severe damage, I ended up with terrible nutritional deficiencies and stress fractures in BOTH feet due to floppy tendons (as a result of those nutritional deficiencies).

I hope this information helps you....and that you will consider adopting a gluten-free diet even if your tests come back negative. What would it hurt? You have so much to gain if gluten ends up being your problem. Most people on this forum hope for a positive diagnosis so that they can finally say, "This is my problem," but even a negative diagnosis with a positive response to a gluten-free diet can be a wonderful thing.

[divamomma]

Celiac disease and the gluten free lifestyle are VERY overwhelming at first. It does get easier though! read lots and ask questions. This forum is a great help!

[cyberprof]

Hi everyone,

I am a new user and have not yet been diagnosed with Celiac disease. I am scheduled for an endoscopy (and a colonoscopy - yecch) this coming Wednesday.

To be honest, I always thought that celiac disease was one of those vague, perhaps overdiagnosed maladies; I am not trying to offend anyone here, I am just being honest about my ignorance. After reading more about the disease, I am confused by the long, sometimes conflicting list of symptoms, and I have a lot of questions.

I have had diarrhea and abdominal pain for a long time; I was diagnosed with achalasia four years ago, and had an operation to keep the valve between my esophagus and stomach open. I don't have reflux at all, but the intestinal cramping is really bad. Additionally, I have noticed hair loss, dry skin, itchiness on my legs, leg spasms, and severe arthritis symptoms (my lower legs are now bowed due to the displacement of my kneecaps). I have severe neck pain, and have been told that I need an operation to fuse three vertebrae in my neck; I don't want this done. I also get numbness and tingling on my right side, from my neck to my foot.

My questions are: Can ALL of this be related to celiac disease? If I do have it, and the symptoms are all related, will ALL of these symptoms improve after I start the gluten-free diet? And, finally, how hard is it to maintain a gluten-free diet?

Thank you for your help; I am really scared about all of this.

Oh, yes, I had the operation to fuse two vertebrae in my neck in 1989 and the doc told me in 2006 that I'd have to have another fusion. After the 1989 fusion, I had numbness and tingling down the back of my arm and leg on the right side also. I was also diagnosed with degenerative disk disease in my lower back in 2005. In 2007 I was diagnosed with celiac and went gluten-free, and I've not had any tingling or numbness EVER since I went gluten-free. I also had severe arthritis since 1976, which is about 75% reduced since I went gluten-free. And my low back pain - which had been a daily thing - is only once every 2-3 months now. Also, I had chronic plantar faciitis (or at least that's what they diagnosed me with) for 3 years before going gluten-free and it took me about a year to figure that that pain wasn't coming back.

I suppose the disc degeneration could be a coincidence but I think the 1989 rupture and the resultant pain is from gluten.

You may find a relief when you go gluten-free. Hold off on the surgery until you go gluten-free. Hope you have sucess as I did.