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Is Gluten Intolerace Always Hereditary?


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5 replies to this topic

#1 ruthla

 
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Posted 08 January 2008 - 06:27 AM

I haven't had any kind of testing done- I figured that if the dietary changes help, there's the positive test right there. I've just heard about too many false negatives to put much stock in lab tests.

OTOH, it would be nice to know exactly what I'm dealing with. Is this something I'm likely to outgrow as my gut heals? Do I really need to avoid all grains forever, or am I only allergic to wheat? Is it worth the effort (and expense) to take gluten out of my kids' diets too? All 3 of them, or does only one child need the gluten-free diet and the others can safely eat gluten away from home? Would it actually benefit them to feed them gluten-free foods I can't eat (I can't have soy, dairy, legumes, etc) or would I be making these changes just to avoid the risk of CC?

And finally, there are Halachic (Jewish Law) issues. It's required to have 2 loaves of bread on Friday nights ,and 2 more on Saturday with the Shabbos (Sabbath) meals. Bread is defined as something baked from wheat, barley, oats, rye, or spelt. If I'm allergic to wheat, for example, I could have bread made from rye or barley. If I have celiac disease, then I wouldn't be required to eat food that poisons me. I'm not sure what the Halacha (Jewish Law) says about guests or other family members- can they fulfill the challah requirement on gluten-free bread if they can tolerate gluten but others at the table can't?

I'm not sure how to approach a rabbi when I'm really not sure what's going on with my body right now. Besides, I can't currently tolerate any of the gluten-free "grains" that could be used in baking. I've been avoiding the challah (bread) on Shabbos altogether, and being super careful about crumbs- we use rolls instead of large loaves of bread and disposable plates for bread.

I'm not sure exactly what I'm facing here. Is it an allergy or sensitivity to gluten that sets off my Fibromyalgia? I know that cow's milk protein sets off a flare. Is my Fibromyalgia actually undiagnosed Celiac? Is Celiac ALWAYS heriditery, or is there a chance that my kids can safely consume gluten?
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Ruth, single mom to DD1, 14, DD2, 113, and DS, 7

Kosher, low carb (since 6/3/07), gluten free (since 11/15/07), dairy free, mostly legume (incl. soy) free since 2/7/08. Now on the Blood Type Diet (type O) which includes cutting out corn as well. I have fibromyalgia and this diet is helping me feel better.

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#2 kbtoyssni

 
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Posted 08 January 2008 - 07:28 AM

I was originally diagnosed with FMS. 99% of my symptoms went away when I went gluten-free.

I realize you're going on dietary response, but if you do have any form of gluten intolerance, you will not grow out of it. Once you heal, you may be able to eat gluten without many symptoms, but you will still be doing damage and be setting yourself up for bigger health issues in the future. Note that this is an autoimmune disease, not an allergy.

As for the kids, if you have celiac, I would watch them very carefully for symptoms as this is genetic. I would lean towards making your whole house as gluten-free as you can, mostly for CC issues. I don't think it's a big deal if you buy gluten-free mainstream products like gluten-free yogurt and pasta sauce and salsa and corn tortillas. It will certainly make you life easier. As for the expense, try not to use a lot of gluten-replacement products like bread and crackers and cookies. Start baking on your own. I do nearly all of my shopping at a regular grocery store, being careful of the brands I purchase.

So, about the Jewish bread laws. I have no idea. I've seen similar discussions relating to Christian traditions and the communion bread - you might want to do a search on that. I think it generally depends on the church you go to and how strictly they interpret the Bible. I think you'd have to talk to your Rabbi about this one.
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Gluten-Free since September 15, 2005.
Peanut-Free since July 2006.

#3 ruthla

 
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Posted 08 January 2008 - 07:55 AM

I was originally diagnosed with FMS. 99% of my symptoms went away when I went gluten-free.

I realize you're going on dietary response, but if you do have any form of gluten intolerance, you will not grow out of it. Once you heal, you may be able to eat gluten without many symptoms, but you will still be doing damage and be setting yourself up for bigger health issues in the future. Note that this is an autoimmune disease, not an allergy.

So how do I go about getting an official test for this? I am NOT willing to eat gluten again for the sake of a lab test! Should I talk to the pediatrician about testing my kids before making any dietary changes for them? I'm not at this point restricting what they eat away from home, although I do plan to make my kitchen gluten-free (or close to it) for my own health and sanity.
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Ruth, single mom to DD1, 14, DD2, 113, and DS, 7

Kosher, low carb (since 6/3/07), gluten free (since 11/15/07), dairy free, mostly legume (incl. soy) free since 2/7/08. Now on the Blood Type Diet (type O) which includes cutting out corn as well. I have fibromyalgia and this diet is helping me feel better.

#4 nora_n

 
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Posted 08 January 2008 - 09:11 AM

The best test is a biospy of the duodenum while still on gluten...it may be accurate for a short while after going gluten-free but itis probably individual how long the damage will still be visible .

I do not have the main genes (DQ2 or DQ8) and there are many here on the forums who were just as ill but did not show the right kind of villi damage uner a microscope......I think sometimes they are barking up the wrong tree, the doctors I mean. This is an autoimmune disease and I guess it wouod be better to expose the samples to gluten and then detect the antibodies, or something like that. Blood tests are not that accurate as the main issues are other places than in the blood.
There are some tests for gluten intolerance, a stool test that detects antibodies , but it is not an official celiac test. And, there are antigliadin blood tests but they are not so specific for celiac but very specific for gluten intolerance (many doctors do not believe in gluten intolerance)
I am in europe and here we usually get sent to an endoscopy for biopsies. They also want to take a look to see if there are other htings going on. IBS is also a possibility, or Mb. Crohn or Ulcerative Colitis. And, celiacs are more prone to certein cancers of the intestines if they continue to eat gluten so the doctors want tocheck if something like that is already going on.
nora
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gluten-free since may 06 after neg. biopsy symptoms went away and DH symptoms which I had since 03 got gradually better.
daughter officially diagnosed celiac and casein intolerant.
non-DQ2 or DQ8. Maybe DQ1? Updated: Yes, double DQ5
Hypothyroid since 2000, thyroxine first started to work well 06 on a low-carb and gluten-free diet
Lost 20 kg after going gluten-free and weighing 53 kg now. neg. biopsy for DH. Found out afterwards from this forum that it should have been taken during an outbreak but it was taken two weeks after. vitaminD was 57 nmol/l in may08)

#5 kbtoyssni

 
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Posted 08 January 2008 - 09:44 AM

So how do I go about getting an official test for this? I am NOT willing to eat gluten again for the sake of a lab test! Should I talk to the pediatrician about testing my kids before making any dietary changes for them? I'm not at this point restricting what they eat away from home, although I do plan to make my kitchen gluten-free (or close to it) for my own health and sanity.


The two traditional medical tests are the blood test and the scope - both of which will only be positive if you've been eating gluten and have a lot of damage. Some people here go through enterolab (enterolab.com). They test for gluten intolerance and will get a positive result much sooner than traditional testing so you don't need to have as much damage to get a positive. If you search on enterolab, you can read tons of discussions on this. Besides that, dietary response may be your only method of diagnosis at this point.

I went by dietary response myself. I'd done an elimination diet because that's what a few FMS books recommended and it was very obvious to me that gluten was an issue when I added it back in. I'd been (mostly) gluten-free for two weeks at that point and didn't get a positive blood test. I didn't care. I felt so much better I just wanted to get on with getting healthy and go back to living my life! If you are ok with not having an "official" diagnosis and can stay gluten-free without it, I don't see why it's necessary. Some people do need that piece of paper to force themselves to remain gluten-free, though.

I would get the kids tested soon. Even restricting gluten at home can alter test results. Also, if you kids do have it, they may not test positive because they're too young to have a lot of damage. Also realize that if your kids that don't have it now, they may still develop it later in life - something to look out for as they grow up.
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#6 Fiddle-Faddle

 
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Posted 08 January 2008 - 01:29 PM

The best test is a biospy of the duodenum while still on gluten..


Lots of disagreement on this subject!

Many believe that dietary response is the most accurate form of diagnosis.

As far as hereditary, the predisposition is hereditary, but just because you are predisposed to get it doesn't mean you WILL get it. Something has to trigger it.

Many people with Lyme Disease have a kind of non-celiac gluten intolerance that is triggered somehow by the Lyme. Mercury toxicity can cause leaky gut, which is also linked with gluten intolerance. THere are probably a number of other situation I don't even know about.

As far as Halachic law, it depends on how Orthodox you are, and what you, your Rabbi, and your shul believe.

I make a sort of fake, gluten-free Challah--but it's not braided, because it's made from a batter, and you can't braid a batter. But it's very, very good, and even my gluten-eating family members like it (I have to fight them for it). I use potato starch and corn starch to make it (it's almost like it's Passover 365 days a year, except I can't eat Matzo and I can use leavening). If you have Roben Ryberg's Gluten-Free Kitchen--it's the Egg Bread recipe, and I add a teaspoon of yeast for flavor, and sprinkle the top with sesame seeds.

I have always been taught that Health comes first. Spelt, rye, and oats all contain gluten--having that on the table risks YOUR health, even if you don't eat it. But it doesn't risk anyone else's health to eat gluten-free Challah (unless they are somehow allergic to corn, potatoes, or eggs!)

Like most religious issues, it's very tough to discuss, as everybody seems to have very strong feelings about it.
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