Gluten Free

[jiminyC_fan]

Hi everyone,

I keep reading and hearing about "gluten free". What is it all about? Allergies, healthy eating, what?

Just curious. I feel out of the loop.

 

[kerstfan1]

its about allergy of wheat

 

[DVCisME]

It is an intolerance to wheat, rye and barley. If a person has celiac disease, they are required to eat gluten free to be free of symptoms. It is a medical condition and is very strict- no cross contamination.

 

[Caropooh]

Gluten is a protein that's found primarily in wheat, rye and barley. It's hidden in many things like some candies (licorice for one), sauces, gravies, seasonings, etc. Celiac Disease is not an allergy, but is an auto-immune disease where you have an intolerance to gluten. My DD11 was recently diagnosed with Celiac. It's been an eye opening experience to say the least. We've become very good at label reading.

Here's a couple web sites about celiac...

http://www.celiac.com/
http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/

 

[mjkacmom]

It is an intolerance to wheat, rye and barley. If a person has celiac disease, they are required to eat gluten free to be free of symptoms. It is a medical condition and is very strict- no cross contamination.

Maybe you could convince my DH of this. He brought the kids to a picnic, and they were serving hot dogs. He took one for dd7 (celiac), took off the bun, and told her it was fine. That night, she was keeled over in pain, until she had a bought with diahrea (which she used to have daily before we changed her diet).

 

[Kathi OD]

Maybe you could convince my DH of this. He brought the kids to a picnic, and they were serving hot dogs. He took one for dd7 (celiac), took off the bun, and told her it was fine. That night, she was keeled over in pain, until she had a bought with diahrea (which she used to have daily before we changed her diet).

Unfortunately, there are some people who don't believe that this condition really exists. They think that the person is faking. There is no medication that can cure celiac. The only cure is a gluten-free diet.

Just ask my husband, who didn't believe I had a problem until my gastroenterologist not only told him, but showed him a film of my latest colonoscopy and the damage gluten was doing to my digestive system.

The scary thing is that a celiac who doesn't follow a gluten-free diet could actually die of malnutrition because the gluten destroys the villia in the intestine, making it impossible for the body to absorb the nutrients in food. Gluten hides in many things we ingest, including toothpaste and medicines.

FWIW, because many people with celiac don't have severe symptoms, think they have irritable bowel syndrome and are not treating the disease properly. Ten years ago, this was one of the most under-diagnosed medical conditions. I was actually told by one doctor that my symptoms were "in my head." The only problem with that line of thinking was that my symptoms were blood tests and not any complaints I was having.

 

[DVCisME]

I had been having symptoms since I was 12. They said it was IBS when I was 17. When I had my first son, my knees would just give out, joints, hurt, etc. When I had my second son Wheat thins were my go to food. After I delivered I could barely pick my head up from the pill. They said I has ppd. If I had not seen Elisabeth Hasselback on the View describing celiac disease I would never have known. My doctor at the time did not even know the blood test, I had to look it up. My levels were thru the roof. In the last 3-4 years a lot of food has been coming out gluten free and some of it even finally tastes good..lol!

 

[crashbb]

Hi everyone,

I keep reading and hearing about "gluten free". What is it all about? Allergies, healthy eating, what?

Just curious. I feel out of the loop.

Both.

Most/many people who eat gluten free have Celiac disease (as pointed out my many PPs).

Some have other auto-immune diseases that respond to a gluten free diet (my lupus symptoms are minimized by a gluten free diet, though my celiac tests are only borderline - sensitivity/specificity are issues for Celiac diagnosis). Since I have symptomatic improvement, I choose not to repeat the biopsy and treat myself as having Celiac disease. The biopsy (and other tests) are only accurate if you are eating gluten and I am not willing to go through that. This one is a bit dodgy since it is well known that many people with one auto-immune disease have others, so it is possible that there is an overlap of symptoms and that the gluten free diet is actually treating an unknown Celiac disease.


Some children on the autistic spectrum appear to respond well to a gluten free diet (generally done in tandem with a casein free diet).

Still others find relief from other diseases by keeping gluten free (don't know what they are, but I'm sure that there are ones I don't know about).

Other people see it as a "trendy" new health diet.

Many reasons to keep gluten-free, but Celiac disease is the main one (and the only one, that I know of, where a gluten free diet is needed to treat the disease.

 

[MIGrandma]

My doctor diagnosed me with irritable bowel syndrome awhile back. I had been having symptoms (diahrea) for about 10 years. I had been reading about gluten-free, so decided to give it a try and see what happened. Within just a couple of days I was so much better. I don't have celiac's as I can sometimes have a bit of wheat gluten and it doesn't bother me. But if I go overboard, I have a lot of trouble staying away from the bathroom. So for the most part I do try to stay away from wheat-gluten. But I can have a salad and just pick off the croutons and it doesn't bother me. I recently bought a Breadman Pro breadmaker (because it has a gluten-free setting) and I've started making my own bread. It's nice that restaurants are now becoming more gluten-free friendly too.

 

[dzorn]

My doctor diagnosed me with irritable bowel syndrome awhile back. I had been having symptoms (diahrea) for about 10 years. I had been reading about gluten-free, so decided to give it a try and see what happened. Within just a couple of days I was so much better. I don't have celiac's as I can sometimes have a bit of wheat gluten and it doesn't bother me. But if I go overboard, I have a lot of trouble staying away from the bathroom. So for the most part I do try to stay away from wheat-gluten. But I can have a salad and just pick off the croutons and it doesn't bother me. I recently bought a Breadman Pro breadmaker (because it has a gluten-free setting) and I've started making my own bread. It's nice that restaurants are now becoming more gluten-free friendly too.

You may want to go through more testing. You may be able to tollerate a small amount of gluten but a true celiac will still have intestional damage with out symptoms until the villa are extremely damaged.

Denise in MI

 

[Caropooh]

You may want to go through more testing. You may be able to tollerate a small amount of gluten but a true celiac will still have intestional damage with out symptoms until the villa are extremely damaged.

Denise in MI

Very true! My daughters only symptoms were stomach pain, irritablity and some tiredness. We had been back and forth to our Family Practice doctor for 6 months. She tested positive for H-Pylori which is a bacteria found in the GI track. The antibiotics helped her pain for about 2 weeks. Our doctor then referred us to the GI doctor. He did a biopsy and it came back positive for minor celiac, her blood test was negative for celiac. My DH and I (with the GI's input) decided to have her go gluten-free for the 6 weeks until her follow up appointment. Within a few days, she was pain free and happier! When we had the follow up, the doctor decided that due to the good results of her being gluten-free that it was celiac, even if the blood test said otherwise.
Even though at this point it seems to be minor, he still wants her totally gluten-free due to even small amounts of gluten could cause more damage to her.

 

[jiminyC_fan]

Thanks everyone. I have been seeing it around and then at a wedding this weekend someone freaked over cross contamination of utensils. Now I know why.

 

[lovetoscrap]

DD10 has been having major GI issues the last few years that have been getting progressively worse. Over the summer it has become almost constant. I have been fighting and fighting to try to get some answers. I keep being told, stress, IBS, faking it etc...

We went gluten free with her about a week and a half ago and she is doing better. At this point we can't say if it is because a GF diet is easier to digest so it has calmed an IBS flare up, or if it is because her symptoms are always cyclical so this was just the time for her to feel better, or if indeed she is having a problem with Gluten. Hopefully we will find that out in the coming months.

This has been an interesting and very eye opening experience! I had no idea how many things have a gluten containing ingredient in them. I am happy that we have been able to find many substitutes but the $$$ is starting to add up. Since the majority of what we can find that is GF are being made by small, specialty companies, many whom are also Organic, the prices are high.

FWIW, because many people with celiac don't have severe symptoms, think they have irritable bowel syndrome and are not treating the disease properly. Ten years ago, this was one of the most under-diagnosed medical conditions. I was actually told by one doctor that my symptoms were "in my head." The only problem with that line of thinking was that my symptoms were blood tests and not any complaints I was having.

I can't get her doctors to do anything. I had to push to have blood work done but that came back as negative for celiac. But from what I am reading that may be a false negative, and could be affected by the fact that there may not be much damage to her insides yet. So the dr is quick to write her off as IBS/faking instead of really taking the time to figure out why she is in so much pain and misery.

She is missing a lot of school because of this and the dr just says to send her anyway. HUH? If the kid can't stay out of the bathroom for more than 5 minutes, is in so much pain she can't stand up straight and is sobbing how do I send her to school?


Sorry, I am very frustrated right now and needed to vent.

 

[crashbb]

DD10 has been having major GI issues the last few years that have been getting progressively worse. Over the summer it has become almost constant. I have been fighting and fighting to try to get some answers. I keep being told, stress, IBS, faking it etc...

We went gluten free with her about a week and a half ago and she is doing better. At this point we can't say if it is because a GF diet is easier to digest so it has calmed an IBS flare up, or if it is because her symptoms are always cyclical so this was just the time for her to feel better, or if indeed she is having a problem with Gluten. Hopefully we will find that out in the coming months.

This has been an interesting and very eye opening experience! I had no idea how many things have a gluten containing ingredient in them. I am happy that we have been able to find many substitutes but the $$$ is starting to add up. Since the majority of what we can find that is GF are being made by small, specialty companies, many whom are also Organic, the prices are high.



I can't get her doctors to do anything. I had to push to have blood work done but that came back as negative for celiac. But from what I am reading that may be a false negative, and could be affected by the fact that there may not be much damage to her insides yet. So the dr is quick to write her off as IBS/faking instead of really taking the time to figure out why she is in so much pain and misery.

She is missing a lot of school because of this and the dr just says to send her anyway. HUH? If the kid can't stay out of the bathroom for more than 5 minutes, is in so much pain she can't stand up straight and is sobbing how do I send her to school?


Sorry, I am very frustrated right now and needed to vent.

The blood test is very problematic. The biopsy is much better (though not perfect), but should be done before gluten is eliminated from the diet (or, at least, after a gluten challenge).

 

[lovetoscrap]

The blood test is very problematic. The biopsy is much better (though not perfect), but should be done before gluten is eliminated from the diet (or, at least, after a gluten challenge).

We will be doing a gluten challenge. Both her ped and the ped GI refuse to do any more blood work (she needs the full Celiac Panel) unless I can show to them it is necessary. So that means a month of so of GF and then back on Gluten and see how she does. And unless the blood work shows something it is very doubtful they will do a biopsy. They have already told me they won't.

Actually I am probably going to find another GI for her and maybe another ped also depending on how this diet change goes and how they react to what I find.

 

[crashbb]

We will be doing a gluten challenge. Both her ped and the ped GI refuse to do any more blood work (she needs the full Celiac Panel) unless I can show to them it is necessary. So that means a month of so of GF and then back on Gluten and see how she does. And unless the blood work shows something it is very doubtful they will do a biopsy. They have already told me they won't.

Actually I am probably going to find another GI for her and maybe another ped also depending on how this diet change goes and how they react to what I find.

I also did a gluten challenge, and felt so much better that we didn't bother re-doing the tests (which were borderline), so I understand. With my Lupus, the tests are even more wonky.

Hopefully you can figure out what is going on with your daughter. Or, if you don't, that the gluten free diet helps her (even if you don't get a conclusive celiac diagnosis).

ETA - Sorry if it appeared that I was criticizing you. I just wanted to say that the negative/borderling blood test did not mean that your daughter doesn't have Celiac disease.

 

[Caropooh]

We will be doing a gluten challenge. Both her ped and the ped GI refuse to do any more blood work (she needs the full Celiac Panel) unless I can show to them it is necessary. So that means a month of so of GF and then back on Gluten and see how she does. And unless the blood work shows something it is very doubtful they will do a biopsy. They have already told me they won't.

Actually I am probably going to find another GI for her and maybe another ped also depending on how this diet change goes and how they react to what I find.

I feel your pain and frustration, Scrappy.
We were lucky and got a fairly quick diagnosis, but I understand the whole school thing. Kathryn missed quite a bit of school last school year because of her stomach.
Do you know if they have tested her for H-Pylori? We honestly thought that was it after the antibiotics helped. It might be something to consider. (if you can get the doctor to do the test) I will say it is a TON of pills she has to take every day for 2 weeks. I believe it was like 18 pils a day.
I agree with you that it might be time to find some new doctors.

 

[mjkacmom]

The blood test is very problematic. The biopsy is much better (though not perfect), but should be done before gluten is eliminated from the diet (or, at least, after a gluten challenge).

This is true. I brought up the panel to my pediatrician, because of bathroom issues and lack of weight gain (girl eats like a pig, and has no body fat). She didn't meet a lot of the characteristics (definitely NOT lethargic, no bloated belly, huge appetite), but we have some family members who have it, and they begged me to have her tested for 2 years.

The pediatrician prescribed the panel, and one test came out significantly positive, and the GI got her in for a biopsy in 2 days. I was shocked when I heard she was positive (and also positive for lactose intolerance). I guess I was in denial, because she never complained. I didn't even know the intestinal issues were daily until we met with the GI, and she told her.

So, if you want to test for celiac, you can't go gluten free. Another way to find out is to have her tested for the gene (blood test). If she doesn't have the gene, she isn't celiac.

 

[DVCisME]

Just wanted to provide some information. There are some main stream gluten free products out there. Chex cereal comes in gluten free varieties, Betty Crocker makes gluten free cake mix and brownie mix, fruit roll-ups, some fruit snacks, Nature Valley has a gluten free bar, Bisquick (just came out)etc

General Mills has a great website:
http://www.liveglutenfreely.com/

Some other great ideas for kids are instead of regular sandwiches you can put turkey/cheese on a rice cake.

Hope that helps!