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Anya

Does It Have To Be Completely Gluten Free

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I am wondering if you have to be completely gluten free as a Celiac? My 20 month old daughter has the celiac gene. I have a GI condition that I have managed with an "almost gluten free" and casein free diet. My daughter has had recurrent c.diff infections for over 8 months and the celiac gene was discovered as part of investigating underlying conditions. It is likely that we are both celiac. I find it so hard to go completely gluten free. I have been fine with the occasional gluten. I am wondering if other people have experienced that? I am wondering if I need to put my daughter on a strict gluten free diet or if I can relax it a bit. I have been eating spelt bread, which is significantly reduced in gluten. I tried gluten free bread with my daughter, but she spit it out and got mad at me. If I could just do the spelt bread and crackers with her, that would make things so much easier.


2 year old daughter and myself with Celiac gene, negative blood work, yet positive response to glutenfree diet. Will do gluten challenge and endoscopy when daughter goes to preschool.

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I am wondering if you have to be completely gluten free as a Celiac? My 20 month old daughter has the celiac gene. I have a GI condition that I have managed with an "almost gluten free" and casein free diet. My daughter has had recurrent c.diff infections for over 8 months and the celiac gene was discovered as part of investigating underlying conditions. It is likely that we are both celiac. I find it so hard to go completely gluten free. I have been fine with the occasional gluten. I am wondering if other people have experienced that? I am wondering if I need to put my daughter on a strict gluten free diet or if I can relax it a bit. I have been eating spelt bread, which is significantly reduced in gluten. I tried gluten free bread with my daughter, but she spit it out and got mad at me. If I could just do the spelt bread and crackers with her, that would make things so much easier.

Try Rudi's or Udi's. Even a little gluten will cause damage. You may not have a big reaction now, but it may cause issues later on. I'm not going to lie and say that gluten free is easy, but IMHO it is necessary.


Mommy to James, who is Celiac diagnosis by blood test and confirmed by endoscopy on 9/29/2009. Our household has been gluten free since.

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If you or your daughter have celiac then you are doing damage to your bodies even if you don't have noticeable reactions. So to answer your question, yes, you need to be completely gluten free.

We eat Udi's gluten free bread.


Started on this journey w/ my 9 yr old son after a bout w/ the flu in the fall of 2009.

2 neg celiac blood tests, mine was also neg. No endo done. Son had x-ray, showing severe constipation. Son has latex allergy. KP for both of us.

Long family history of bowel problems, auto-immune and all sorts of cancers. My G-mother informed me that she was put on a gluten free diet after she had my mom (1950's), of course she stopped when she felt better. She has had problems ever since I can remember.

So here we are! I do have my son's Dr to thank for even bringing up celiac! Thank You Dr.B!

My adult daughter also has been helped by eating gluten-free.

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Short answer: yeah, 'fraid so. You'll need to keep your gluten levels below 20ppm of gluten. Otherwise, even if you don't see symptoms of this, it's doing damage.

I think of it this way: a little cut across your skin may not hurt you much, but if you cut the same scar open, over and over and over, it's a bit more of an issue. That's pretty much what you're doing when you eat gluten, just damaging your intestines over and over and over.

You also have cumulative problems that can arise. My father's spine and joints deteriorated from gluten exposure. My own spine had issues, as well as neurological problems. My brother had ulcers develop. My 12 year old daughter had such severe depression that she considered jumping off the roof. Kids who get this young can have developmental issues, problems during puberty, and women can have big issues with still-births and fertility, when the time comes.

And as one more problem, you are making both you and your daughter immuno-compromised for a while each time you consume gluten. While maybe this doesn't matter at times, if it happens at the WRONG time it can have severe consequences. Getting a serious flu when your immune system isn't in top shape could be really bad, for example. Or you could have my problem. I caught a disease that is normally unpleasant, but not horrific, but because I was immuno-compromised, it invaded other areas of my body and I ended up sick and barely able to walk for nearly a year.

I know it's hard - oh wow do I - but I guess I think of it like looking both ways before I cross the street. It's extra work, and kind of annoying. If I don't do it, maybe nothing bad happens that I notice. But when something DOES go wrong, it's SO wrong that I'd be wishing I'd been doing the extra work all along. So in the end, I consider the risks of eating gluten not worth the short term benefit of eating it, if that makes sense?


T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive

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I am wondering if you have to be completely gluten free as a Celiac? My 20 month old daughter has the celiac gene. I have a GI condition that I have managed with an "almost gluten free" and casein free diet. My daughter has had recurrent c.diff infections for over 8 months and the celiac gene was discovered as part of investigating underlying conditions. It is likely that we are both celiac. I find it so hard to go completely gluten free. I have been fine with the occasional gluten. I am wondering if other people have experienced that? I am wondering if I need to put my daughter on a strict gluten free diet or if I can relax it a bit. I have been eating spelt bread, which is significantly reduced in gluten. I tried gluten free bread with my daughter, but she spit it out and got mad at me. If I could just do the spelt bread and crackers with her, that would make things so much easier.

Spelt is a wheat and it is not "significantly reduced in gluten" in terms of a celiac diet. All grains from the triticum family will trigger the autoimmune reaction, including wheat, rye, barley, spelt, kamut, einkorn wheat, durum, semolina, and triticale. A slice of spelt bread is an enormous dose of gluten for someone with celiac.

Having the celiac gene is not the same as being celiac. About 30% of the US population has either DQ2 or DQ8 but only about 1% is celiac. If you are unwilling to stick to a strict celiac diet, you will need to gluten challenge with the help of your doctor and undergo both blood testing and a biopsy. The blood tests have a 20% false negative rate, which is why you need both. To get reliable results on biopsy, you have to eat about the equivalent of 4 slices of bread a day for quite a while. When I looked up research papers, the challenge time to get reliable tests was typically 12 weeks.

If you are celiac, meaning you have an autoimmune reaction with detectable antibodies, the dermatitis herpetiformis rash, or villous damage from eating gluten-containing grains, eating gluten is pretty dangerous and will adversely affect your long-term health. There is a nasty condition called refractory celiac disease, where you stop responding to the diet and have a higher risk of intestinal cancers. Refractory celiac is thought to be triggered by continuing to consume wheat. People with celiac who continue to trigger autoimmunity also tend to develop other autoimmune diseases, including thyroid disease, Sjogren's syndrome, and autoimmune neurological disoreders. Malabsorption from "silent" celiac where there is damage but not symptoms from eating traces of wheat can cause vitamin B and D deficiency and osteoporosis. Very small amounts of wheat have been documented to cause damage in celiacs, so it really is a "zero tolerance" diet. Some cross-contamination is inevitable, but we never knowingly ingest gluten.

If you are not celiac but sensitive to wheat, it's unclear what you need to do. Some scientists think non-celiac gluten intolerance is just an early stage of celiac disease and you should avoid all gluten. Others think it may be a somewhat different disorder and you can eat what you can tolerate. We certainly have people around here who have pretty bad vitamin deficiencies and neurological problems from non-celiac intolerance, and they get noticeably ill from tiny amounts of gluten.

So... I'd strongly suggest you get diagnosed for sure with a challenge, or make the commitment to stick to a celiac diet.

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