My Girlfriend Got Tested

[mario]

Hi, i met my girlfriend about 4 years ago. She was told back in her country when she was a child that she had malabsorption and flattened villi, but she was never told to follow a gluten free diet, which made her confused. After 3 years of strict gluten-free diet, she decided to go get tested for celiac, doctor told she doesn't have the disease. Off course her blood tests will be negative if she has been gluten-free for 3 years, yet she wants to be certain. I explained to her the only way of getting a positive diagnosis is by eat lots of gluten for many months, I know it will make her very sick. She also has Chrons disease and she hasn't been putting on wieght. Her doctor told her that even though she has been gluten free for 3 years, he can still detect the disease for blood work. Is this true from the doctor, she said he wasn't a good doctor.

[ravenwoodglass]

No it is not true that they will be able to find the antibodies if she is already gluten free. She would need to do a gluten challenge for a couple of months and then get retested for the antibodies, and even then they may be a false negative. People can have Chrons and Celiac both. People can also have other intolerances, dairy and soy being the most common for us. Is she very strict with the gluten-free diet and protecting herself from cross contamination?

[mario]

No it is not true that they will be able to find the antibodies if she is already gluten free. She would need to do a gluten challenge for a couple of months and then get retested for the antibodies, and even then they may be a false negative. People can have Chrons and Celiac both. People can also have other intolerances, dairy and soy being the most common for us. Is she very strict with the gluten-free diet and protecting herself from cross contamination?

Hi raven, thanks !

Yes she is very strict with the diet, she hasn't been putting on wieght because she eats very little and very slow. She is 90lbs at 38 yrs old. I think they didn't know much about the disease back in the days in Cuba.

She said she feels some what better on the diet, but she doesn't have much energy. Everything she eats is safe home made and labelled gluten free. She also got tested for extra allergies and everything was ok. Did her routine blood tests and eveything was ok also.

[ravenwoodglass]

Hi raven, thanks !

Yes she is very strict with the diet, she hasn't been putting on wieght because she eats very little and very slow. She is only 90lbs at 38 yrs old. I think they didn't know much about the disease back in the days in Cuba.

She said she feels some what better on the diet, but she doesn't have much energy. Everything she eats is safe home made and labelled gluten free. She also got tested for extra allergies and everything was ok. Did her routine blood tests and eveything was ok also.

Keep in mind that other intolerances are intolerances and not allergies so they won't show up in allergy tests. If she is still consuming dairy and soy I would suggest she drop those and then add them back in when she is feeling better. Add them in one at a time for at least a week and see if she reacts.

Some good supplements won't hurt just make sure they are gluten free and do not have wheat or barley grass. Even though those are thought to be safe they aren't. Some sublingual B12 may help with the energy even if they say her levels are fine.

[mario]

Keep in mind that other intolerances are intolerances and not allergies so they won't show up in allergy tests. If she is still consuming dairy and soy I would suggest she drop those and then add them back in when she is feeling better. Add them in one at a time for at least a week and see if she reacts.

Some good supplements won't hurt just make sure they are gluten free and do not have wheat or barley grass. Even though those are thought to be safe they aren't. Some sublingual B12 may help with the energy even if they say her levels are fine.

Hi raven, would it be a good idea for her to test herself? Like eat gluten?

I know she gets very sick with very little contamination.

[ravenwoodglass]

Hi raven, would it be a good idea for her to test herself? Like eat gluten?

I know she gets very sick with very little contamination.

Oh gosh no! If she gets sick from a little CC she will get very, very sick from a challenge. Testing herself with soy or dairy was what I meant. If she is still consuming those have her drop them and then if she is feeling better she could add them in one at a time and see if symptoms return. I suggested that because she is still feeling ill even on the diet. That may be due to the Chrons but it could also be due to another intolerance in addition to gluten.

One more thought. Do you still eat or drink gluten foods? If you do are you making sure you brush your teeth really well before you kiss? You can contaminate her that way.

[mario]

Oh gosh no! If she gets sick from a little CC she will get very, very sick from a challenge. Testing herself with soy or dairy was what I meant. If she is still consuming those have her drop them and then if she is feeling better she could add them in one at a time and see if symptoms return. I suggested that because she is still feeling ill even on the diet. That may be due to the Chrons but it could also be due to another intolerance in addition to gluten.

One more thought. Do you still eat or drink gluten foods? If you do are you making sure you brush your teeth really well before you kiss? You can contaminate her that way.

Yes i brush all the time... but we both have celiac disease..

[Looking for answers]

Geez, if she has Chron's Disease, that's reason enough to follow a gluten-free diet. Please encourage her to read Jordan Rubin's "The Maker's Diet." He nearly died of Chron's when he was younger, and cured himself of it following a gluten and dairy free diet. He's the CEO of Garden of Life vitamins and supplements, by the way.

[mommida]

Has she ever had an upper endoscopy with biopsy? She had problems when she was younger and "she eats slow" are red flags to me. There is a possiblity of a congenital defect or damage/inflamation in the upper digestive track.

If she has any test results can you get a copy of them? It would be a good thing to know what if anything has been ruled out from the test results.

[mario]

Has she ever had an upper endoscopy with biopsy? She had problems when she was younger and "she eats slow" are red flags to me. There is a possiblity of a congenital defect or damage/inflamation in the upper digestive track.

If she has any test results can you get a copy of them? It would be a good thing to know what if anything has been ruled out from the test results.

hi mommida... yes she did get the endoscopy done and biopsie too when she was younger in her country. They told her she had malabsorption and villi atrophy in the duodenum. Thats just a longer term of saying you have celiac disease.. to mee anyways..

[Marz]

Geez, if she has Chron's Disease, that's reason enough to follow a gluten-free diet. Please encourage her to read Jordan Rubin's "The Maker's Diet." He nearly died of Chron's when he was younger, and cured himself of it following a gluten and dairy free diet. He's the CEO of Garden of Life vitamins and supplements, by the way.

I'd second this suggestion, but I take some of what he says with a pinch of salt. I can't remember specifics, but some of what he said didn't really have any scientific basis and he didn't really explain it other than saying it worked for him.

I know of someone who was very ill with Chrons who got a lot better after following this diet.

Then again, I think being gluten-free, and doing a trial for soy and dairy will probably also find the culprit. Celiacs often have problems with these two foods for some reason. The problem in dairy is the milk protein casein, so watch out for caseinate being added to non-dairy processed foods if that does turn out to be a problem.

Hope she finds the culprit soon