Newly Diagnosed, Need Advice!

[Annie4439]

Hello Everyone. First time submitting, long time reader My son has celiac. He was screened several years ago because he has juvenile diabetes. Now I have been diagnosed as well, leading me to conclude we have a genetic link in our family, and his was not just diabetes-related.

Even though I know how to shop, what to buy, etc. I'm still getting sick. I've been on the diet for four weeks. The terrible stomach aches and bloating have gone away, but my hair is falling out, and my bowel movements haven't normalized. I also get really loud stomach growling, but not as much as I used to before going gluten free. I know I'm adhering to the diet. The one thing I haven't done is buy new cookware. My thought is that the gluten in my diet has decreased dramatically. Even if my pans have trace amounts, wouldn't my symptoms clear up anyway?

[Emilushka]

  On 10/16/2010 at 3:10 PM, Annie4439 said:

Even if my pans have trace amounts, wouldn't my symptoms clear up anyway?

The way the immune system works, it will react strongly to even a very small amount (trace gluten left on your cookware, for example) with a full-blown reaction. The question is just how sensitive your immune system is. Especially when you're first detoxing it's wise to be a little extra-paranoid and get either new non-stick cookware or use stainless steel (which can be washed fully). Beware wooden spoons or nonstick ladles/spoons/utensils as well - they can hold onto trace amounts of gluten.

So no, if you still have trace amounts of gluten coming in, your body will react with a full response and your symptoms will not clear up.

[Annie4439]

  On 10/16/2010 at 3:52 PM, Emilushka said:

The way the immune system works, it will react strongly to even a very small amount (trace gluten left on your cookware, for example) with a full-blown reaction. The question is just how sensitive your immune system is. Especially when you're first detoxing it's wise to be a little extra-paranoid and get either new non-stick cookware or use stainless steel (which can be washed fully). Beware wooden spoons or nonstick ladles/spoons/utensils as well - they can hold onto trace amounts of gluten.

So no, if you still have trace amounts of gluten coming in, your body will react with a full response and your symptoms will not clear up.

Thanks for your response. I was worried that might be the cause so it looks like I need to do some shopping today.

[SaraKat]

I was dx'd in August and my left sided rib pain (my only symptom for the most part) got much better about 2 weeks going gluten-free. I didn't buy any new cookware, my Dr told me it wasn't necessary, but if you think that is the only way you are getting gluten- maybe give it a shot.

[Emilushka]

  On 10/16/2010 at 5:28 PM, SaraKat said:

I was dx'd in August and my left sided rib pain (my only symptom for the most part) got much better about 2 weeks going gluten-free. I didn't buy any new cookware, my Dr told me it wasn't necessary, but if you think that is the only way you are getting gluten- maybe give it a shot.

Keep in mind that everybody's sensitivity levels are different, so while cookware might be a problem for one person, it might not for another. Everybody's antibodies are probably slightly different and bind in slightly different ways, so for some, it might take more than a trace amount to trigger an autoimmune response and for others, the cookware might be enough to make you sick.

That's the really frustrating thing, I think: figuring out where you stand on the spectrum of sensitivity. Because there's no way we have of knowing without getting sick accidentally.

[Skylark]

Also, be sure you're not eating oats and go completely off dairy. Some celiacs cross-react to oats or to casein as if they were gluten. Soy intolerances are also not uncommon, though it will just make you sick and not have the autoimmune reacton. You can add foods you eliminate later if you get to feeling better.

[T.H.]

You could be getting more gluten in your gluten free food than you are from your pans, actually.

( Open Original Shared Link )

Grains that are naturally gluten free, and other food items that would normally not contain gluten, are quite often contaminated when they are harvested, transported, milled, or processed. So this can affect both the whole grains and flours AND the gluten-free products that they are used in, like cookies, breads, etc... Because 'gluten free' is a range, after all, not zero gluten. Sigh. Frustrating for us, huh?

For many celiacs, these small amounts are not an issue. If, however, you are a bit more sensitive, you may still have damage from gluten because your gluten free products are not gluten free enough for your body. There was a study done on celiacs that weren't healing on a gluten free diet, and when they put them on a more restricted gluten free diet than they had been on, many of them began healing (If you are interested, feel free to email me and I can hunt it down for you).

Something that might help to try first?(and save you money on new cookware) You can go down to basic foods - fruits, veggies, plain meats that aren't sliced in the deli (Big CC risk). Get grains from gluten free facilities, like Lundberg and Bob's Red Mill. While these are both still not 'zero gluten,' they are usually gluten free enough for most people.

Intolerances and food allergies can also affect how you are healing.

Just as an aside - this is what happened to me. I did not heal completely, although things improved on a gluten-free diet. We found food allergies and eliminated them. But I still had problems, had to drop tons of food. And only within the last few months (it's been a year now), have I finally realized that I have been having gluten reactions to many of the 'naturally gluten free' products and other things that simply have too much gluten contamination for me, personally. It was a real surprise, considering that two other celiacs in my family don't have this problem at all. But...now it's slowly getting better, so that's a definite plus! :-)

[SaraKat]

  On 10/16/2010 at 5:47 PM, Emilushka said:

Keep in mind that everybody's sensitivity levels are different, so while cookware might be a problem for one person, it might not for another. Everybody's antibodies are probably slightly different and bind in slightly different ways, so for some, it might take more than a trace amount to trigger an autoimmune response and for others, the cookware might be enough to make you sick.

That's the really frustrating thing, I think: figuring out where you stand on the spectrum of sensitivity. Because there's no way we have of knowing without getting sick accidentally.

I understand, that is why sometimes I wish I had more of a reaction when having gluten. My TTG levels were off the charts high, but I don't have many symptoms- except for the rib pain. I have no GI issues at all. I think when I go back in Dec for my first blood test gluten-free for 3 months maybe I will know how sensitive I am. I was just offering up what my Dr told me- he saw my levels and did my biopsy and told me that changing cookware wasn't necessary. If my levels are still high in Dec, maybe I will go to that degree.

I wish a little light went off when you ingest gluten! That would make things so much easier.

[Kelly&Mom]

I actually seemed to get worse on a gluten-free diet at first...... still sorting out other food issues. My daughter did improve but not enough so we went back to the Dr. and she was diagnosed with irritable bowel syndrome which is apparently quite common in people with celiac. Since we've restricted the poor thing's diet even more (my husband said, "you're starving her") she is actually improving and able to eat some things that were triggers like soda and watermelon. Hang in there but check out trigger foods for IBS because maybe one of them is causing issues. If you're drinking milk or eating dairy, we were told to take a lactose enzyme for a while until the villa that digest lactose have repaired themselves. Also, take fish oil-were told it helps with healing. Goodluck!

[Dixiebell]

My daughter did improve but not enough so we went back to the Dr. and she was diagnosed with irritable bowel syndrome which is apparently quite common in people with celiac.

I would be inclined to believe that she has an irritable bowel because she has celiac. IBS is a symptom, not a diagnosis. Many people are misdiagnosed with IBS and other things before they found out they are celiac or gluten intolerant.

If you're drinking milk or eating dairy, we were told to take a lactose enzyme for a while until the villa that digest lactose have repaired themselves.

This may work for some, but most have to stop any dairy completely for a while. Also, some are casein intolerant too.