Poor Knowledge From Ohio Doctors

[everhopefull]

I need some help,

It has been two months since I was diagnosed with celiac desease. I had a GI that did a biopsy and bloodwork and was told I was positive. The doctor then told me about a support group here in town and told me to search the web for more information so I joined the group and searched the web. I am still having discomfort after two months of a strict gluten free diet and fowl bowel movements. A ct of the abdomen was done and an ultrasound which everything checks ok. To my understanding I may need prendisone to help cut down on inflamation. How do I convince my family doctor who knows nothing about celiac desease that I should be put on prendisone to see if that will help. If anyone has any ideas PLEASE RESPOND and Thank You.

[VegasCeliacBuckeye]

  everhopefull said:

I need some help,

It has been two months since I was diagnosed with celiac desease. I had a GI that did a biopsy and bloodwork and was told I was positive. The doctor then told me about a support group here in town and told me to search the web for more information so I joined the group and searched the web. I am still having discomfort after two months of a strict gluten free diet and fowl bowel movements. A ct of the abdomen was done and an ultrasound which everything checks ok. To my understanding I may need prendisone to help cut down on inflamation. How do I convince my family doctor who knows nothing about celiac desease that I should be put on prendisone to see if that will help. If anyone has any ideas PLEASE RESPOND and Thank You.

Where in Ohio do you live?

It will be easier for us to recommend a doctor if we know which part of the state you live in.

[kbtoyssni]

In my experience, younger doctors are more open to alternative medical techniques and suggestions from their patients. If you've got an old doctor who is rooted in his/her ways, it might be time to look for a new one. I don't know anything about this drug, but if you've got an open-minded doc, he/she might also be able to suggest something better for you.

[glutenggirl]

  everhopefull said:

I need some help,

It has been two months since I was diagnosed with celiac desease. I had a GI that did a biopsy and bloodwork and was told I was positive. The doctor then told me about a support group here in town and told me to search the web for more information so I joined the group and searched the web. I am still having discomfort after two months of a strict gluten free diet and fowl bowel movements. A ct of the abdomen was done and an ultrasound which everything checks ok. To my understanding I may need prendisone to help cut down on inflamation. How do I convince my family doctor who knows nothing about celiac desease that I should be put on prendisone to see if that will help. If anyone has any ideas PLEASE RESPOND and Thank You.

You do not need prednisone, you need to find out where you are getting hidden gluten. Did you have a colonscopy? Celiac disease can occur with crohn's disease.

Undoubtedly you are still ingesting gluten. Anything that goes on your body (soaps, makeup lotion etc) or in your mouth must be determined to be gluten free. Get the gluten out of your home.

[rez]

It could be dairy as well.

[glutenggirl]

  everhopefull said:

I need some help,

It has been two months since I was diagnosed with celiac desease. I had a GI that did a biopsy and bloodwork and was told I was positive. The doctor then told me about a support group here in town and told me to search the web for more information so I joined the group and searched the web. I am still having discomfort after two months of a strict gluten free diet and fowl bowel movements. A ct of the abdomen was done and an ultrasound which everything checks ok. To my understanding I may need prendisone to help cut down on inflamation. How do I convince my family doctor who knows nothing about celiac desease that I should be put on prendisone to see if that will help. If anyone has any ideas PLEASE RESPOND and Thank You.

What are you eating? List everything that entered your mouth yesterday, starting with the type of tooth paste you use.

There is a misperception that celiacs can eat at restaurants. we can not. If you are eating at restaurants then you are having gluten exposures.

Another unappreciated gluten exposure is through the vaginal lining with vinegar d%$#@#$s. I suspect gluten can also be found in the semen of a male who is eating gluten. I have seen a case where a woman had a history walnut anaphylaxis and went into anaphylaxis after intercourse with her husband. He had been eating walnut.

If a food allergen can pass through semen, so can gluten.

[CarlaB]

  glutenggirl said:

I suspect gluten can also be found in the semen of a male who is eating gluten.

If a food allergen can pass through semen, so can gluten.

I would seem like this would be the case, but it is not. You can search the board ... we've discussed it extensively.

Most vinegar is fine, except for flavored vinegars that have added gluten, including malt vinegar.

[everhopefull]

I have been very careful as to what I am eating. I always read the ingredients and have been well informed as to what to stay away from. My doctor is younger but most here in the mansfield area are clueless. When all this started a year and a half ago it seemed like me whole body is paying the price. It started with stomach cramps and continues. It then manifested to muscle and back pain. I have had an upper GI, colonoscopy, CT scans, ultrasounds, bloodwork. All comes back ok with the exception of a test they just did on my iron level specific which shows it at 37 which they said was low but I dont know what the normal range should be. All I know is the muscle pain and back pain is severe, worse in the mornings and I don't know if malabsorbtion can play a part in that. I have been eating at Wendy's whenever I go out. I always only get a baked potato and chili which is supposed to be gluten free. I am a 41 yr old male just an FYI

Thanks for any help

[CarlaB]

Ask to cut your own potato just to be sure the knife they cut it with isn't contaminated.

Guess the d%$#@#$s are a moot point for you.

[glutenggirl]

  everhopefull said:

I have been very careful as to what I am eating. I always read the ingredients and have been well informed as to what to stay away from. My doctor is younger but most here in the mansfield area are clueless. When all this started a year and a half ago it seemed like me whole body is paying the price. It started with stomach cramps and continues. It then manifested to muscle and back pain. I have had an upper GI, colonoscopy, CT scans, ultrasounds, bloodwork. All comes back ok with the exception of a test they just did on my iron level specific which shows it at 37 which they said was low but I dont know what the normal range should be. All I know is the muscle pain and back pain is severe, worse in the mornings and I don't know if malabsorbtion can play a part in that. I have been eating at Wendy's whenever I go out. I always only get a baked potato and chili which is supposed to be gluten free. I am a 41 yr old male just an FYI

Thanks for any help

Chances are you are still getting occult gluten. If you have a house pet, the food contains gluten. A low iron is one of the most common labs to be abnormal with ongoing gluten exposure. It is absorbed in the duodenum and jejunum. Ongoing malabsorption, would explain your low iron. The muscle cramps you are having could be due to your low iron. Iron is required for oxygen delivery to the tissue. When muscle does not get enough oxygen, pain develops. Fatigue and shortness of breath are common symptoms of iron deficiency. You could be having other micronutrient malabsorption which is causing your pain.

The iron level of 37 - was that the ferritin level? Ferritin is the storage form of iron. Ferritin drops before serum iron drops.

Normal ferritin for a male is 20-300ng/ml. A normal iron for a male is 50-160 mcg/dl. If 37 is your iron level, then I suspect you have a very low ferritin. I would definitely be on a multivitamin with iron, ferrous sulfate 325 mg three times daily, and calcium 1000mg daily. You are probably calcium deficient ( could cause bone pain) if you are malabsorbing iron.

As far as the carlaB comment goes:

I strongly disagree with the gluten free community about vinegar. If the label does not say gluten free, or if the label does not state vinegar made from rice, wine, apple cider, avoid it. Balsamic vinegar is made from grape, but I think the cheap balsamic vinegar has occult gluten. Expensive ($25 for 4-6 ounces) balsalmic vinegar is ok. I may be new to this forum, but I am not new to the disease, and my expertise goes well beyond my being a gluten sensitive patient.

Make your home gluten free. Don't eat at any restaurants.

You could very well be eating something you are simply allergic to. When gluten damages the intestines, the processing of other foods is compromised. Subsequently, food allergies develop. Pea, bean, tree nut, fish and shellfish are common allergies in adult. Milk is a big problem in gluten sensitive patients. See an allergist who believes in a adult food allergy.

[glutenggirl]

  glutenggirl said:

Chances are you are still getting occult gluten. If you have a house pet, the food contains gluten. A low iron is one of the most common labs to be abnormal with ongoing gluten exposure. It is absorbed in the duodenum and jejunum. Ongoing malabsorption, would explain your low iron. The muscle cramps you are having could be due to your low iron. Iron is required for oxygen delivery to the tissue. When muscle does not get enough oxygen, pain develops. Fatigue and shortness of breath are common symptoms of iron deficiency. You could be having other micronutrient malabsorption which is causing your pain.

The iron level of 37 - was that the ferritin level? Ferritin is the storage form of iron. Ferritin drops before serum iron drops.

Normal ferritin for a male is 20-300ng/ml. A normal iron for a male is 50-160 mcg/dl. If 37 is your iron level, then I suspect you have a very low ferritin. I would definitely be on a multivitamin with iron, ferrous sulfate 325 mg three times daily, and calcium 1000mg daily. You are probably calcium deficient ( could cause bone pain) if you are malabsorbing iron.

As far as the carlaB comment goes:

I strongly disagree with the gluten free community about vinegar. If the label does not say gluten free, or if the label does not state vinegar made from rice, wine, apple cider, avoid it. Balsamic vinegar is made from grape, but I think the cheap balsamic vinegar has occult gluten. Expensive ($25 for 4-6 ounces) balsalmic vinegar is ok. I may be new to this forum, but I am not new to the disease, and my expertise goes well beyond my being a gluten sensitive patient.

Make your home gluten free. Don't eat at any restaurants.

You could very well be eating something you are simply allergic to. When gluten damages the intestines, the processing of other foods is compromised. Subsequently, food allergies develop. Pea, bean, tree nut, fish and shellfish are common allergies in adult. Milk is a big problem in gluten sensitive patients. See an allergist who believes in a adult food allergy.

One more thing, you should ask your physician for a bone density scan. Given your age and your gluten condition, you could have significant osteoporsis of the spine causing back pain. Fosamax and like meds reduce the bone resorption that is seen in osteoporosis.

[CarlaB]

  glutenggirl said:

I strongly disagree with the gluten free community about vinegar. If the label does not say gluten free, or if the label does not state vinegar made from rice, wine, apple cider, avoid it. Balsamic vinegar is made from grape, but I think the cheap balsamic vinegar has occult gluten. Expensive ($25 for 4-6 ounces) balsalmic vinegar is ok. I may be new to this forum, but I am not new to the disease, and my expertise goes well beyond my being a gluten sensitive patient.

Some cheap balsamic vinegars have flavorings with gluten.

If just "vinegar" is listed on the label, it's apple cider vinegar.

Personally, I've never had a problem with distilled vinegar, though it's not in much that I eat. As glutengirl said, it's generally accepted as being gluten-free, though some aren't comfortable with it.

[katifer]

i was diagnosed in Nov. with celiac. i had to stop eating all gluten, soy, dairy, sulfites for all the symptoms to go away. My doctor explained that my intestines need to heal and hopefully i can add some of those back in---just a thought..soy and dairy kill me just like gluten...oh and i found yeast and beans can do the same thing until you have healed...i know that is alot but i am still eating well (veggies,fruit,meat, potatoes, rice)