Unsure If Celiac Or Not

[JohnnyMax]

Hi,

Here's my story...

Had sudden bloating and constipation in 2007. Saw a gastro in a local well known hospital. They did abdominal ultrasound found a small sludge ball in gallbladder, nothing else. Had Upper GI series, nothing. Had colonoscopy, found a polyp, did biopsy, was hyperplastic, told not to worry. Initial diagnosis, possible IBS. We tried antibiotics, Rifaximin, did not help. At the time I was going through a lot of stress, so the doctor tried Valium, seemed to help,then changed over to Klonopin, same thing, if I had an episode of bloating, it made a difference. Over a period of about one year, the symptoms went away. I ate and drank anything I wanted for about 2 years and unfortunately gained about 20 lbs.

Now comes 2010, again lots of stress, worse than the first time, suddenly one day I wake up and the bloat is back, worse than the first time. I get a script from my GP for Klonopin, but is not a helpful at the first time. I wait it out for several months, hoping it will pass again, but it didn't.

I saw another Gastro, he runs some routine blood test, abdominal ultrasound and upper GI series with small bowel, only abnormal is possibility of subclinical hyperthyroid, T3 and T4 are OK, TSH is low. He advises I see an internest. I set up an exam with one that I hear is very good. She decides to runs some antibody test for Celiac and thyroid. The thyroid comes back OK, the Celiac is borderline. She recommends I see a GI friend of hers for the endoscopy with biopsy, but considering what I have read, they may not be 100% accurate and do not like the idea of the procedure to begin with. She suggested I just then try going Gluten free and see what happens. I started this diet a few days ago, but as of now, even more bloated than before. I am doing an Atkins type minus the gluten, but perhaps my fat intake is too high, since I read there may be fat malabsorption as part of the problem, so I will be cutting back on this and continuing with the diet. Today I took some Klonopin and it seems to help, at least this time. I constantly feel like my insides are shaking, this has been a common symptom I have had since 2007 when it first came. I really do not trust these doctors to make a good diagnosis so I am searching the internet and these boards for information from real live people who are dealing with this. No one in my family has ever been diagnosed with Celiac, but I guess that is neither here nor there.

I am inclined to stick with the diet for a few weeks and see if there are any improvement. What do you guys think, and suggestions? Anything is welcome.

John

[Ox on the Roof]

I'm new here and also undiagnosed, but I have to say that I have that same feeling of my insides shaking. That's why they kept putting me on anti-anxiety stuff last year, but it didn't help. I am curious as to how many Celiacs have that internal shaking feeling. It drives me crazy!

I hope you feel better in 2011! There's a lot of helpful people on here who give good advice.

[mushroom]

For many of us we are the first in the family to pinpoint what the family's 'digestive issues' are Generations have had problems with either no diagnosis or stupid diagnoses. It is not until our generation that there has been much awareness of what this problem actually is, and mostly the patients are ahead of the doctors in diagnosis, although it sounds like you have some professionals who are on to it. If your celiac is "borderline" it could well be a weak positive. It would be interesting to know the result and the ranges the lab uses. As for the biopsy, now is your best shot for it, while you are still glutened up. If you go gluten free now and then decide you want the testing, you will have to go back on gluten for a couple of months of the equivalent of 3-4 slices of bread a day to get a valid test. After you have been gluten free, this may not be a happy prospect, trust me, if gluten is your problem, because you will feel worse than before most likely. If I were you I would follow the internist's recommendation and get the biopsy now, and then immediately go gluten free without even waiting for the result, which may or may not be positive. Regardless, you should give the diet a good three-month trial because there are as many non-celiac gluten intolerants as there are celiacs.

[Takala]

I have never ever heard of clonazepam being used in the treatment of celiac or gluten intolerance. Open Original Shared Link

Everyone has "stress." The majority of healthy people don't need sedatives to be able to digest their food properly.

One of the symptoms of gluten intolerance or celiac is mental anxiety, which is in turn caused by lack of nutrition from the damage to the gut lining. Staying on the gluten free diet in a serious way, and perhaps supplementing with gluten free B vitamin complexes, a multivitamin, and calcium/magnesium will help more than attempting to mask the symptoms with benzodiazepines.

[eatmeat4good]

Here is what the "Dr.'s did for me.

Migraine headaches-Dilaudid

Nausea-Promethazine

Diarrhea-Immodium AD

Shaky, nervous, and weak- Xanax

Depression-Zoloft

Sores that won't heal-Antibiotics, antifungals,Steroid cream,

Sores still not healing- Must be neurotic excoriation

Swelling of body and face- Lasix

Dehydration- "You should drink more water."

Bladder infections and poor urine output with ketones- "mind your nutrition" and take this antibiotic every day.

Undigested food passing through- "Chew your food better."

Inability to eat/swallow "You HAVE to eat! Just increase your meat and vegetable intake."

Heart palpitations and anxiety when walking- "You need more exercise."

Still having heart palpitations and it is getting worse- "Must be anxiety...here is more xanax."

Muscle weakness and fatigue- "Must have fibromyalgia." Take Flexaril

I think I have vitamin B deficiency- "Eat more eggs."

High blood pressure- Blood pressure medicine.

Weight gain- "Are you overeating?" me-"No, but everthing is getting worse. List symptoms again, Dr. says, "If you don't see a therapist or take a Yoga class I am not going to continue to see you." me- "But I can't even lift a cup of coffee." Dr.-"What do you want me to do? Put you in the hospital?"

Cuticles peeling and bleeding- "You need to stop biting your nails." me-"but I don't"

Kidney spasms- "Must be back pain...a person can't feel their kidneys." (yes they can)

To ER for chronic dehydration, diarrhea, nausea, vomiting, sores on wrist, face, neck.-Given IV fluids, Xanax, Promethazine and sent home.

Bed ridden for 5 years with fatigue, anxiety and depression.

Told Dr. I can't get out of bed unless I don't eat for three days. "Anorexia Nervosa."

"You need to see a psychiatrist." me- "But I have and it doesn't help, I can't even think or complete my sentences." "Dr. increased Zoloft to 150mg a day and Effexor to 150 mg. a day, and told to continue with Xanax.

Three ER trips and 7 years later....Found Celiac.com

Three months Gluten Free-

All symptoms gone except Dermatitis Herpetiformis sores that will take more time.

No medications needed.

Unbelievable. But true.

Keep trying to get a diagnosis.

Do try Gluten Free and see if it helps you.

I don't understand Dr.'s at all.

But I have read that the Dr. who originally advocated handwashing (Semmelweiss)was scorned by his peers for advocating handwashing by Dr.'s before they examined their patients. He was before his time. Now it is commonly accepted.

Semmelweiss despaired and committed suicide.

Now all Dr.'s wash their hands.

I'm thanking Dr. Green for Celiac: A Hidden Epidemic

and

Scott Adams

for saving my life by opening this site.

I never dreamed you couldn't get medical care in the United States.

[mushroom]

Quite a damning indictment of the medical system in the U.S., eatneat4good. You can get medical "treatment" but not medical care What we need are fewer pharmaceuticals and more doctors who 'listen' to their patients.

[eatmeat4good]

Actually, I would like to know if is acceptable to start a list of Dr.'s who are NOT knowledgeable of Celiac or Gluten Intolerance.

Maybe someday Celiac.com would be the list no Dr. wants to be on.

I thought about listing each Dr.'s name next to their statements, responses and treatment they provided.

[mushroom]

I think you had better run this idea by Scott - it is his site and you would need his okay for something like this.

[eatmeat4good]

Awww that was just a thought.

I also fight the urge to stick my arm out and swipe all the loaves of bread off the shelves in the stores to "raise" awareness.

Time will help these thoughts I'm sure.

[JohnnyMax]

I'm new here and also undiagnosed, but I have to say that I have that same feeling of my insides shaking. That's why they kept putting me on anti-anxiety stuff last year, but it didn't help. I am curious as to how many Celiacs have that internal shaking feeling. It drives me crazy!

I hope you feel better in 2011! There's a lot of helpful people on here who give good advice.

Thanks for responding, sorry you are having the same problem, but glad to hear someone else is have the same "shaking" syndrome. I too am curious if others have had this and what, if anything, helped. I still believe my issues stem from stress. I went through a roller coaster of anxiety earlier in the year, and my new business keeps it stressful every day, so I am not able to rid myself of the stress like I did the first time. Even the doctor said that stress can throw off any diagnostic test. I think she is a good doc, she hesistates from prescribing meds, instead emphasizes diet as the solution. I believe she is right since I do not eat correctly anymore, and am trying to get this in order, time will tell.

[JohnnyMax]

Here is what the "Dr.'s did for me.

Migraine headaches-Dilaudid

Nausea-Promethazine

Diarrhea-Immodium AD

Shaky, nervous, and weak- Xanax

Depression-Zoloft

Sores that won't heal-Antibiotics, antifungals,Steroid cream,

Sores still not healing- Must be neurotic excoriation

Swelling of body and face- Lasix

Dehydration- "You should drink more water."

Bladder infections and poor urine output with ketones- "mind your nutrition" and take this antibiotic every day.

Undigested food passing through- "Chew your food better."

Inability to eat/swallow "You HAVE to eat! Just increase your meat and vegetable intake."

Heart palpitations and anxiety when walking- "You need more exercise."

Still having heart palpitations and it is getting worse- "Must be anxiety...here is more xanax."

Muscle weakness and fatigue- "Must have fibromyalgia." Take Flexaril

I think I have vitamin B deficiency- "Eat more eggs."

High blood pressure- Blood pressure medicine.

Weight gain- "Are you overeating?" me-"No, but everthing is getting worse. List symptoms again, Dr. says, "If you don't see a therapist or take a Yoga class I am not going to continue to see you." me- "But I can't even lift a cup of coffee." Dr.-"What do you want me to do? Put you in the hospital?"

Cuticles peeling and bleeding- "You need to stop biting your nails." me-"but I don't"

Kidney spasms- "Must be back pain...a person can't feel their kidneys." (yes they can)

To ER for chronic dehydration, diarrhea, nausea, vomiting, sores on wrist, face, neck.-Given IV fluids, Xanax, Promethazine and sent home.

Bed ridden for 5 years with fatigue, anxiety and depression.

Told Dr. I can't get out of bed unless I don't eat for three days. "Anorexia Nervosa."

"You need to see a psychiatrist." me- "But I have and it doesn't help, I can't even think or complete my sentences." "Dr. increased Zoloft to 150mg a day and Effexor to 150 mg. a day, and told to continue with Xanax.

Three ER trips and 7 years later....Found Celiac.com

Three months Gluten Free-

All symptoms gone except Dermatitis Herpetiformis sores that will take more time.

No medications needed.

Unbelievable. But true.

Keep trying to get a diagnosis.

Do try Gluten Free and see if it helps you.

I don't understand Dr.'s at all.

But I have read that the Dr. who originally advocated handwashing (Semmelweiss)was scorned by his peers for advocating handwashing by Dr.'s before they examined their patients. He was before his time. Now it is commonly accepted.

Semmelweiss despaired and committed suicide.

Now all Dr.'s wash their hands.

I'm thanking Dr. Green for Celiac: A Hidden Epidemic

and

Scott Adams

for saving my life by opening this site.

I never dreamed you couldn't get medical care in the United States.

It is really horrific, what the medical community is capable of. I really hesitate from becoming a victim of this type of treatment. Docs are great for running test, but no so good as treating the problem correctly. Most just prescribe meds just to keep the person happy and not loose a patient. Sometimes the meds works, could just be "placebo effect". Big Pharma drills in their minds, that drugs are the cure-all for everthing that ails you, nothing could be farther from the truth, they may help in some instances, but create other problem, sometimes more serious that the initial illness. Personally I prefer to opt for more natural treatments if possible, ie herbs, vitamins etc, there is much less of a downside to these. Have even been considering oriental medicine, I know from experience from a vet I used a while back, his system worked better than the conventional vets advice. I will keep researching this issue and hopefully will come up with a solution. Hope your improvements last and these issues become a thing of the past!

[JohnnyMax]

For many of us we are the first in the family to pinpoint what the family's 'digestive issues' are Generations have had problems with either no diagnosis or stupid diagnoses. It is not until our generation that there has been much awareness of what this problem actually is, and mostly the patients are ahead of the doctors in diagnosis, although it sounds like you have some professionals who are on to it. If your celiac is "borderline" it could well be a weak positive. It would be interesting to know the result and the ranges the lab uses. As for the biopsy, now is your best shot for it, while you are still glutened up. If you go gluten free now and then decide you want the testing, you will have to go back on gluten for a couple of months of the equivalent of 3-4 slices of bread a day to get a valid test. After you have been gluten free, this may not be a happy prospect, trust me, if gluten is your problem, because you will feel worse than before most likely. If I were you I would follow the internist's recommendation and get the biopsy now, and then immediately go gluten free without even waiting for the result, which may or may not be positive. Regardless, you should give the diet a good three-month trial because there are as many non-celiac gluten intolerants as there are celiacs.

I agree with you on the fact we are really the first generation to bring this issue to light, prior to this time, the awareness of "gluten intolerance" was just not there.

All the testing in the world does not guarantee and accurate diagnosis. Doctors always add a caveat to their findings by saying "just because the results were negative, doesn't mean you don't have this illness".

Doing the endoscopy may not be definitive, there may not be damage yet, or they may not biopsy are area that is damaged, also the area my be farther down than the scope can reach, no guarantee at all. I have also looked into the possibility of stool tests and even genetic testing, way less invasive, though not sure if they are more accurate. Like me doc said, try the diet, if it works then stick with it. I have no problem adapting to this type of diet, just have to learn more about which foods are acceptable and which are not. I will continue to look into other possibilities while I do this, not convinced gluten is the culprit yet.

The bottom line, is to try the treatment, namely diet in this case and see what happens.

[JohnnyMax]

Actually, I would like to know if is acceptable to start a list of Dr.'s who are NOT knowledgeable of Celiac or Gluten Intolerance.

Maybe someday Celiac.com would be the list no Dr. wants to be on.

I thought about listing each Dr.'s name next to their statements, responses and treatment they provided.

The list would be way too long, better keep it short and list the good ones, would only be a few names!

[JohnnyMax]

Quite a damning indictment of the medical system in the U.S., eatneat4good. You can get medical "treatment" but not medical care What we need are fewer pharmaceuticals and more doctors who 'listen' to their patients.

Sad, but true. Modern medicine is good for running tests and skyrocketing health costs, but not so good in treating the patients accurately. Docs just prescribe something, if it doesn't work on to the next. They have been "brainwashed" by the phameceutical industry that there is pill for everything. The big drug companies go as far as making up an illness and then bringing to market a pill for it. To them this is just business, the more people they can get 'hooked" on their pills, the better the bottom line. One of my best friends is a really smart pharmacist, he will not take any meds because he knows what they can do to you. I think this speaks volumes about the whole drug industry.

[beefree11]

Sad, but true. Modern medicine is good for running tests and skyrocketing health costs, but not so good in treating the patients accurately. Docs just prescribe something, if it doesn't work on to the next. They have been "brainwashed" by the phameceutical industry that there is pill for everything. The big drug companies go as far as making up an illness and then bringing to market a pill for it. To them this is just business, the more people they can get 'hooked" on their pills, the better the bottom line. One of my best friends is a really smart pharmacist, he will not take any meds because he knows what they can do to you. I think this speaks volumes about the whole drug industry.

Hello JohnnyMax! I am very new here, too. I am here to help my daughter who was found to have a gluten intolerance and/or sensitivity/allergy to wheat. She decided NOT to have the biopsy, and follows a strict gluten free diet.

I have been plagued with digestive issues for as long as I can remember. Possibly beginning with the removal of my gallbladder--in 88 - because of stones. There was a pill for the small ulcer I also had, sprays for the terrible, chronic sinus infections, pills for my migraines, etc. Along with many - too many perhaps? - scans that use ionizing radiation. Yikes. I stopped all that nonsense in 2005 after reading a book about things doctors won't tell you, or something like that.

I changed my diet to as much natural (NOTHING TOUCHED BY A HUMAN OR THEIR PROCESSING EQUIPMENT) and as organic as possible. I gained IMMEDIATE relief with my IBS and GERD. I was amazed. I also looked into filtered water to drink and bathe in, filtered air, and herbal teas. Probiotics. Enzymes. Vitamin D3. Fish oils. Homeopathic remedies.

My migraines have lessened from once a month to four a year, at the most. No more sinus infections/problems. NO MORE IBS. NO Chronic diarrhea that kept me in the bathroom for most of the morning. No burning in my stomach. I had the endo/colo scopes done four years ago and there was some irritation found from reflux. No ulcer. No IBS. No inflammation.

The most wonderful thing I have noticed is no more bloating and the pain. The pain that had me sometimes bent over trying to just walk. It was unbearable. As soon as I began organic foods, these spasms stopped immediately.

All I can come up with is that I get a reaction from the confusing additives, preservatives, and/or "enrichments" that is in all processed foods. I can sometimes take a break from organic and eat at a restaurant but I am sure to take my probiotics and enzymes.

I am 54 years old and in fairly decent health. They are after me to remove my thyroid due to a goiter. I am currently taking iodine. But no statins, no bp meds, nothing. NO FLU SHOTS!! Just a few vitamins here and there and iodine. Good luck to you. I hope you find relief soon.