Conivinced I May have Celiac Disease But Doctor won't Test for It???

[Not_A_Nut]

I would like anyone's opinion on how I should proceed here. I had never heard of Celiac Disease until about a week ago... I have been having Symptoms that relate to Celiac since I was a small child. Let me begin there... As a child I had seizures. They went away at around 2. I have always had very bad stomach problems. Nausea, weird abdominal pain, vomiting, and cramps with bloating sometimes. As a child I also had anxiety problems and mood swings. The doctors always said I had a nervous stomach. Of and on I would have other strange things pop up and go away. When I was in college I lived in a house that was mold infected and afterwards My problems worsened. I began having seizures again (temporal lobe). I was having panic attacks, sleep problems, diagnosed with severe depression, and all of a sudden they said I had ADD. Now I am 40 and for the past 10 years I have still been having all of the above problems plus I have had Kidney Stones, they now say I have Hypothyroidism, High Blood Pressure, Osteo-arthritis, really bad joint pain, muscle cramps, tingling in my extremities, bad fatigue, sleep problems, seizures that they can never seem to find a reason for, edema, I have become lactose intolerant, and I was diagnosed with foliculitis but, I also have a rash on my hands and legs and buttocks that is not consistent with foliculitis (it is more like blisters under a layer of skin but they don't pop or anything). Can anyone tell me if They think this is Celiac's?   Oh, I am also Insulin resistant and I asked my Endocrinologist to test me for Celiac and he told me no???? What is that all about? One last thing.... I have also tested off and on as being anemic and also I had to be hospitalized once because my  potassium level was extremely low. Also, I have been diagnosed with something and then the doctor's would come back later and say no we don't think you have that now. Another thing that is odd is that some days I feel ok on some of my symptoms and then some days I am sicker then a dog... Could the sudden change have to do with what I eat. Should I go to another doctor and get tested? Is the blood test real expensive or something? Not sure how to proceed but I am honestly at my ropes end with this.... No doctors seem to want to help me figure out what is causing all this.... Thank for any help you can give me.....

[PrincessKatie]

Have you seen a gasterointerologist? You should keep going till you find a doctor willing to test you. I can't imagine every doctor in your area is against the idea.

[Not_A_Nut]

Thanks for your comment to my post ; )  I haven't seen a Gasterointerologist yet but going to one is on my list... Trying to find a good one in the area now... I have been to Internal Medicine Doctors, and Endocrinologist, Neurologists, Psychiatrists, Rhuemitologist, Orthopedic Surgeon, Urologist, Oncologist, Otolaryngologists, Epileptologist, and a Bariatric Doctor to name a few..... None of them ever mentioned Celiac Disease to me but, all my symptoms seem to be associated with Celiac Disease so, that got me thinking it might be the cause of some of my medical problems. Trust me, I am trying to figure this out, lol.... All I want is to get better and be able to have a normal life again ; )

[KAnnDo]

Enough of your symptoms sound consistent with Celiac, that I hope you persist in getting a doctor to test you.  A gastroenterologist is your best bet, but an Internist or Family Practice doctor could order the blood tests, if it takes you a while to find a good gastroenterologist.  There is a good movie on Youtube on Celiac disease which discusses, among other things, exactly what blood tests are recommended.  You could take this information to your doctor.  The movie is at the following URL:
http://www.youtube.com/watch?v=QR2LvQmoF1Y

Good luck to you.

[nessa1378]

It definetely sounds  like you could have Celiac. I think you should try the diet as  a trial until you find a Doctor. My thought is if that is it then you are causing some serious system damage to your body if your not, no biggy you just cleansed your body from gluten for a while. With the testing I have never tested positive for the biopsy or the blood work yet my symptoms speak for themselves, aching all over, joint pain, stomache problems, excessive bloating and an all over foggy feeling. My endocrinologist accepted this and stated there are many false negatives and that is the nature of the disease but he trusted my instincts and the lack of symptoms when I had been off of a gluten diet for some time. Do some research for an open minded gastroentologist, you are your best advocate.
Take care

[KAnnDo]

If you go gluten free before being tested for Celiac, you may get a false negative on both blood tests and the biopsy.  I have never been into eating a lot of bread, and my blood tests were positive, but not very high positive.  My GI doc told me not to stop eating gluten before he could schedule a biopsy, which was definitely positive.  I understand the damage to the intestine can be spotty, and there is more chance of missing a damaged area if healing has started from eliminating gluten.  Usually they sample multiple places for the biopsy.

My husband went on the gluten free diet with me during a long vacation, then got sick when he ate gluten at work one day.  The doctor told him he had to go back on gluten at least 6 weeks to get a positive test, if he has celiac.  He didn't want to be sick that long, so decided to just stay off gluten.  We don't know if he has true celiac, or is gluten intolerant, but as long as he stays gluten free and feels better perhaps an exact diagnosis doesn't matter.  The YouTube movie I mentioned in a post above talks about the distinction between celiac and gluten intolerance - more research needs to be done to answer this question better.

[GoingToMakeIt]

You can order gluten sensitivity tests without a Dr from entero labs .com (one word) They are about $260 or so.

[GoingToMakeIt]

I keep wanting to put the 's' there. It is enterolab.com.

[beentrying2quit]

One sure way to find out for yourself is to go on a gluten free diet.  This is extremely difficult as gluten is the second most consumed iten in the USA....sugar is first.  You must eliminate all bread, pasta, salad dressing, croutons, beer, ketchup, some kinds of vinegar and the list goes on.

Google "Celiac symptoms" and I'm sure you will be amazed at how your symptoms sure seem to fall in line with this disease.  As to your doc not testing you for it there is a reason.  Most doctors are unaware of this problem and since there is not medical cure for Celiac's disease they almost always diagnose people with IBS or some other "syndrome."  Your doc cant make any money on you which is probably why he wont test you for it.  THis has been my experience.

Keep posting here..going2makeit has helped me lots over the past few months.