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15 Months Gluten Free - Still Having Problems

hh73

By hh73
in Coping with Celiac Disease

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hh73 Apprentice
hh73
Posted

I have been gluten free for 15 months. I am now 24 years old. I am a young man standing at 5 foot 9 inches and 200 pounds.

Since going on the diet, I cook all my food myself.

I have confirmed via blood test 3 months ago that I am not getting any hidden sources of gluten.

I have not lost any weight, despite swimming, running, and kickboxing three times a week and walking everyday.

As of one month ago, I have started limiting my calorie intake to 1400 calories.

I still have "celiac belly" due to severe bloating problems.

I take a multivitamin.

What gives????? What can I do?

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ravenwoodglass Mentor
ravenwoodglass
Posted

Many of us can have additional intolerances. Soy and dairy being the most common. If you haven't eliminated them you should give that a try.

Are you living in a home with gluten eaters? If you are you need to be very careful about cross contamination. You need a seperate new toaster, your own new strainer and to replace wooden utensils that have been used with gluten foods.

Also if you have a significant other do be sure they brush their teeth well before kissing.

Most of us become more sensitive to small amounts of gluten after we have begun the healing process so do make sure you are reading labels and at least for now avoid stuff made in facilities that process gluten products. Be careful with supplements and OTC and script drugs as their labeling rules are different than the ones for food. For example supplements can have barley and wheat grass and still be labeled gluten free. You don't want to be taking those.

hh73 Apprentice
hh73
Posted
  • Author

Many of us can have additional intolerances. Soy and dairy being the most common. If you haven't eliminated them you should give that a try.

Are you living in a home with gluten eaters? If you are you need to be very careful about cross contamination. You need a seperate new toaster, your own new strainer and to replace wooden utensils that have been used with gluten foods.

Also if you have a significant other do be sure they brush their teeth well before kissing.

Most of us become more sensitive to small amounts of gluten after we have begun the healing process so do make sure you are reading labels and at least for now avoid stuff made in facilities that process gluten products. Be careful with supplements and OTC and script drugs as their labeling rules are different than the ones for food. For example supplements can have barley and wheat grass and still be labeled gluten free. You don't want to be taking those.

It has been confirmed that I don't have any other allergies.

I live alone.

No significant other... (but I am seeing someone I kinda like... =D )

I'm not getting ANY hidden sources of gluten. Blood tests confirm this. I read labels very well, having a background in chemistry.

sahm-i-am Apprentice
sahm-i-am
Posted

My next door neighbor has been having issues when she eats eggs - her throat closes up and she vomits. Then she is fine. But every time she gets allergy tested her results say she is not allergic to eggs. Allergy testing can be wrong. The only way to see if you react to soy, dairy or other grains is to eliminate them for a while and then add one back in and see how it goes.

ravenwoodglass Mentor
ravenwoodglass
Posted

Allergy testing can be wrong. The only way to see if you react to soy, dairy or other grains is to eliminate them for a while and then add one back in and see how it goes.

In addition there is a difference between allergies and intolerances. The only real test for intolerances is to do as sahm suggested, eliminate the items completely for at least a couple weeks and then add them back in (one at a time) and see if you react.

You may also want to try eating just whole unprocessed foods for a while and see if things improve. Many processed foods can be cross contaminated and be an issue even if the label reads okay.

Leper Messiah Apprentice
Leper Messiah
Posted

Thyroid ok?

hh73 Apprentice
hh73
Posted
  • Author

It seems like you all suspect that there are additional allergies & intolerances. Please take my word for it, there are not.

What else could it be?

At the belly button, my waist measures 41 inches when I am bloated. And I am only 5 foot 9 inches tall!

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sahm-i-am Apprentice
sahm-i-am
Posted

It seems like you all suspect that there are additional allergies & intolerances. Please take my word for it, there are not.

What else could it be?

At the belly button, my waist measures 41 inches when I am bloated. And I am only 5 foot 9 inches tall!

Well, you could get a CT scan and see what could be causing abdominal swelling. I had large mesenteric lymph nodes and intestinal wall swelling that caused my tummy bloat.

Could be an infection. Any number of things - ask for a CT scan.

mushroom Proficient
mushroom
Posted

Take Gas-X gelcaps?

dilettantesteph Collaborator
dilettantesteph
Posted

I'm not getting ANY hidden sources of gluten. Blood tests confirm this. I read labels very well, having a background in chemistry.

This is a common misconception about blood tests. While a positive test does indicate gluten indicate, a negative test does not show that there isn't any gluten intake. You can look it up for yourself. There are many examples of celiacs diagnosed with positive biopsies and negative blood tests. In other words there are celiacs eating a full gluten diet who still have negative blood tests.

I would consider sensitivity to lower levels of gluten than the average celiac. This would mean trying a diet of produce and meat alone for a week or so to look for improvement. At that point you may need to look into it further for additional steps to take.

SoyBoy Rookie
SoyBoy
Posted

I have been gluten free for 15 months. I am now 24 years old. I am a young man standing at 5 foot 9 inches and 200 pounds.

Since going on the diet, I cook all my food myself.

I have confirmed via blood test 3 months ago that I am not getting any hidden sources of gluten.

I have not lost any weight, despite swimming, running, and kickboxing three times a week and walking everyday.

As of one month ago, I have started limiting my calorie intake to 1400 calories.

I still have "celiac belly" due to severe bloating problems.

I take a multivitamin.

What gives????? What can I do?

Post a couple of days of what you have eaten if you can (today and yesterday), and please provide more details on your excercise (how far are you swimming, running, walking, etc.). Perhaps someone can help explain.

What is your belly measurement when not bloated? Immodium chewables lessen the bloating for me.

Celiac + a 1400 calorie diet + excercise sounds like a disaster waiting to happen...but I'm not a dietician / nutitionist. Not enough food to nourish your body for the activities that you are doing.

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