Super sensitive to gluten now?

[Mom-ninja.]

I promise that I won't always post about celiac. :001_smile:

 

I became sick again after eating a "gluten free" meal from Amy's. I have since discovered that many people have problems with food from that company.

 

I spoke with a woman at the University of Chicago Celiac Center, and she told me that some people seem to become more sensitive to gluten once they take it out of their diet.

 

It doesn't really seem fair. :glare:

 

Anyway, have any of you become more sensitive to gluten once you went gluten free? I'm wondering how common it is.

 

BTW, the above center will send newly diagnosed celiacs (last three months) with a free care package. :001_smile:

[jplain]

Oh, it's extremely common. Your immune system has put a lot of effort into creating the stuff needed to attack gluten, and it believes it is protecting you. If you withdraw the gluten, you'll begin to heal. But if you are accidentally glutened, your immune system will react even more vigorously. It's happy to have something to do. It likes to feel important and useful. :D

 

Try to look at it as a blessing in disguise. If you become more sensitive, then you'll be aware when you've been glutened and you can try to make sure it doesn't happen again. If you stayed (relatively) insensitive and got glutened often, you could have significant ongoing intestinal damage, and end up never recovering normal (or close to normal) intestinal function.

 

Interesting point about Amy's meals. Cross-contamination is definitely a possibility. Others will point out that a healing intestine is likely to have trouble digesting lots of stuff, even GF grains. If dairy is added into the mix it can get ugly, because your intestine may not have recovered the ability to make enough lactase. So if that particular Amy's dish had a GF grain you don't often eat, or a lot of dairy, perhaps those were the culprits.

[jjins]

Just took my DD (8) off of gluten two weeks ago tomorrow. She has a follow up with GI dr in a week. Celiac blood test negative... but they are still looking.

 

One thing we noticed is that when she got the TINIEST bit of contaminated meat on Monday... she suffered for it greatly. We all thought it seemed much worse, but must of have been from eating "healthy" finally.

 

However, we were told her reaction was due to exactly what you are talking about... being worse after having the gluten out of her system.

 

:glare:

[Slipper]

My daughter became more sensitive to gluten after it was removed. She went from daily stomach-aches and failure to thrive to massive illness after ingesting something with gluten. I don't think it's uncommon at all. :)

[PrincessAriel]

Yes, I am the same way since I have been gluten free. And it has been six years.

[Mom-ninja.]

Oh, it's extremely common. Your immune system has put a lot of effort into creating the stuff needed to attack gluten, and it believes it is protecting you. If you withdraw the gluten, you'll begin to heal. But if you are accidentally glutened, your immune system will react even more vigorously. It's happy to have something to do. It likes to feel important and useful. :D

 

Try to look at it as a blessing in disguise. If you become more sensitive, then you'll be aware when you've been glutened and you can try to make sure it doesn't happen again. If you stayed (relatively) insensitive and got glutened often, you could have significant ongoing intestinal damage, and end up never recovering normal (or close to normal) intestinal function.

 

Interesting point about Amy's meals. Cross-contamination is definitely a possibility. Others will point out that a healing intestine is likely to have trouble digesting lots of stuff, even GF grains. If dairy is added into the mix it can get ugly, because your intestine may not have recovered the ability to make enough lactase. So if that particular Amy's dish had a GF grain you don't often eat, or a lot of dairy, perhaps those were the culprits.

 

I like your description of the immune system. :001_smile:

 

The meal was a rice bowel. It was just brown rice (I eat that all the time and have for years) and veggies. It stated is was also dairy free. It had soy sauce in it, but I've eaten soy sauce quite a few times this past month and have never gotten sick. Gluten free soy sauce of course.

 

The woman from the celaic center told me that the best bet for me is to stick with packaged foods from certified gluten free facilities. Of course, not eating any packaged foods is better.

 

Thanks everyone for helping me feel normal. I start to panic that maybe I have intestinal cancer. Not that I suffer from anxiety as a side effect from gluten. :glare: I think that may be my worst symptom. My GI prescribed me anxiety meds but I can't take it as I'm nursing. I could call him and ask for something nursing friendly, but I'd rather not take anxiety meds if I can help it.

[jplain]

Ah, soy is another usual suspect. Many celiacs find they're soy-intolerant too. Do you often eat other soy-containing foods?

If you do eat other soy without problems, then the cross-contamination theory is more likely.

[ondreeuh]

I have heard/seen that phenomenon as well. It doesn't really seem like an improvement to go from being mildly-affected and being able to eat "normally," to being super sensitive and on a restrictive diet.

 

Even if I have a mild reaction, I'd rather deal with that than switch to the huge ordeal of GF cooking and be stuck with that forever.

 

(I realize that not everyone thinks cooking GF is an ordeal, but I tried it and thought it was a giant pain.)

[Mama Geek]

Dh became much more sensitive after going GF. Before he figured out what the problem was about all he was able to eat was bread and meat. Everything else bothered him bad enough that he didn't want to eat it. Now there are still some things that bother him, but he can eat so many more things now that he isn't sick b/c of the gluten.

[Mom-ninja.]

Ah, soy is another usual suspect. Many celiacs find they're soy-intolerant too. Do you often eat other soy-containing foods?

If you do eat other soy without problems, then the cross-contamination theory is more likely.

 

I'll start paying close attention to how I feel when I eat soy.

 

Last night I had edamame and felt okay. My head hurt but it's been hurting ever since Sat night and hasn't stopped.

 

I'll cut soy out for awhile.

 

 

I have heard/seen that phenomenon as well. It doesn't really seem like an improvement to go from being mildly-affected and being able to eat "normally," to being super sensitive and on a restrictive diet.

 

Even if I have a mild reaction, I'd rather deal with that than switch to the huge ordeal of GF cooking and be stuck with that forever.

 

(I realize that not everyone thinks cooking GF is an ordeal, but I tried it and thought it was a giant pain.)

 

Sorry, but being celiac, for me, it is not a choice of whether or not to go GF. Celiac disease is more than just a mild reaction to gluten.

[Maria from IN]

I like your description of the immune system. :001_smile:

 

The meal was a rice bowel. It was just brown rice (I eat that all the time and have for years) and veggies. It stated is was also dairy free. It had soy sauce in it, but I've eaten soy sauce quite a few times this past month and have never gotten sick. Gluten free soy sauce of course.

 

The woman from the celaic center told me that the best bet for me is to stick with packaged foods from certified gluten free facilities. Of course, not eating any packaged foods is better.

 

Thanks everyone for helping me feel normal. I start to panic that maybe I have intestinal cancer. Not that I suffer from anxiety as a side effect from gluten. :glare: I think that may be my worst symptom. My GI prescribed me anxiety meds but I can't take it as I'm nursing. I could call him and ask for something nursing friendly, but I'd rather not take anxiety meds if I can help it.

 

Have you tested positive for celiac, or are you allergic?

 

I've posted about my allergies before--long story short, I'm allergic to corn, wheat, rye, barley, oats, soy, and mushrooms. I had started reacting to corn, then wheat, then soy and barley. Corn is the worst, so I reacted the most violently to it...other reactions followed when I started cutting stuff out of my diet. I had initially written it off as "well, I must have gotten some corn again."

 

I was told that many people who are allergic to one grain commonly have allergies to others as well. Could it be you are allergic to some of the things you're still eating that you had previously written off as "wheat trouble?" Sometimes reactions take some time to build up...even though you don't feel yourself getting sick, it could be that your body is still reacting in some way.

[jplain]

It doesn't really seem like an improvement to go from being mildly-affected and being able to eat "normally," to being super sensitive and on a restrictive diet.

 

Even if I have a mild reaction, I'd rather deal with that than switch to the huge ordeal of GF cooking and be stuck with that forever.

Would you rather deal with osteoporosis, increased risk of GI cancer, and an increased risk of developing additional autoimmune diseases? Those are just a few of the possible consequences of ignoring a celiac diagnosis. ;)

[Food4Thought]

I have heard/seen that phenomenon as well. It doesn't really seem like an improvement to go from being mildly-affected and being able to eat "normally," to being super sensitive and on a restrictive diet.

 

Even if I have a mild reaction, I'd rather deal with that than switch to the huge ordeal of GF cooking and be stuck with that forever.

 

(I realize that not everyone thinks cooking GF is an ordeal, but I tried it and thought it was a giant pain.)

 

I am another GFree person who has experienced increased sensitivity to gluten. I'd rather have that than continue in living with chronic fatigue, major depression, constant aches and pains, and the intestinal distress I suffered DAILY when I was consuming a food that was like poison to my system. My uncle is dying of colon cancer right now, and they suspect he had undiagnosed celiac. Sorry, the trade-off seems quite clear to me and my family.

[Mom-ninja.]

Have you tested positive for celiac, or are you allergic?

 

 

 

I'm celiac. I've been tested for food allergies and everything was negative.

[ElizaG]

The meal was a rice bowel.

I like your Freudian slip. It sounds like some sort of Asian haggis. Not something I'd want to try without a lot of soy sauce. :D

[Impish]

I have heard/seen that phenomenon as well. It doesn't really seem like an improvement to go from being mildly-affected and being able to eat "normally," to being super sensitive and on a restrictive diet.

 

Even if I have a mild reaction, I'd rather deal with that than switch to the huge ordeal of GF cooking and be stuck with that forever.

 

(I realize that not everyone thinks cooking GF is an ordeal, but I tried it and thought it was a giant pain.)

Its not that simple a choice. In someone with Celiac, gluten kills off part of the digestive system. Eventually, they cannot absorb nutrients from food, etc, and will starve to death.

 

A bit of a cooking ordeal beats the alternative. If it were just a minor 'ick' factor when ingesting gluten, why would anyone bother to go gf? That's like saying 'oh, you only had a minor reaction to peanuts, deal with it' and ignoring the very real life threatening reaction coming down the way.

[keptwoman]

Even if I have a mild reaction, I'd rather deal with that than switch to the huge ordeal of GF cooking and be stuck with that forever.

 

(I realize that not everyone thinks cooking GF is an ordeal, but I tried it and thought it was a giant pain.)

It is a giant pain to start with, but it gets easier. I've been GF for 5 years, and GF cooking is 2nd nature.

 

Having said that, yes, it affects me worse now. Two days ago I used normal soy sauce instead of GF in our meal, I realised but I figured that the amount of gluten in the sauce was miniscule and the amount of sauce I would personally ingest even smaller, so I ate the food. Foolish, foolish me, 5 years and I still haven't learnt! **** stuff shouldn't even be in the cupboard, I need to tip it down the drain.

Yesterday I had severe muscle aches, headaches and extreme fatigue.

I don't have a definitie coeliac diagnosis, I'm in grey zone for life, but I probably have it and I should know better!

Edited September 22, 2011 by keptwoman

[Mom-ninja.]

I like your Freudian slip. It sounds like some sort of Asian haggis. Not something I'd want to try without a lot of soy sauce. :D

 

:smilielol5: Thanks for pointing that out! A good laugh is always needed.

[ElizaG]

It's a wheat free soy sauce. The ingredient list is here:

 

http://www.amys.com/products/product-detail/details/000161

 

I had thought that my own reactions to Amy's foods (when we used to eat them, ~5 or 6 years ago) might have been from some preservative or other mysterious thing in the "spices," but the label now says there are no hidden ingredients. So I'm guessing it was cross-contamination all along. To be honest, I was pretty laid-back about "may contain traces..." foods until the fiasco with the chicken nuggets and hot dogs at Whole Foods in 2008. We ate them a few times before finding out about that. :tongue_smilie: Then I read a few related articles that talked about all the clouds of wheat flour swirling around the factories. We're a lot more careful and suspicious now.

 

In Canada, foods can't be labeled gluten-free unless they're made and packaged in a dedicated 100% GF facility. I'm not sure I'd want the US to go that far -- Canadians have far fewer GF products available than we do as a result, and some foods have a pretty low risk of cross-contamination -- but there's something to be said for it.

Edited September 22, 2011 by Eleanor

[Mom-ninja.]

There a lot of people on a celiac forum that get sick from Amy's. I will no longer be eating anything from that company. Not worth it to me. There are other options.

 

I actually think the regulation in Canada is a good. I'd like to see it here. When you eat something that says GF on the label you expect it to be safe. It's like a double whammy because you thought you were eating something that would be okay.

 

I will now only purchase products from dedicated gluten free sites. That may limit my choices of packaged foods but it doesn't limit my choices of fresh pure foods.

[ElizaG]

There a lot of people on a celiac forum that get sick from Amy's. I will no longer be eating anything from that company. Not worth it to me. There are other options.

 

I actually think the regulation in Canada is a good. I'd like to see it here. When you eat something that says GF on the label you expect it to be safe. It's like a double whammy because you thought you were eating something that would be okay.

I haven't been keeping up with the regulations in detail, but my understanding is that in the US the foods can't contain more than 20 PPM of gluten, which is the international Codex standard for gluten-free. Given that most celiacs around the world seem to do well with Codex-approved foods, as per many years of international medical studies (and many in the US seem to do well with Amy's foods, which are said to test at < 20 PPM), I'm on the fence about whether or not it would be helpful to impose a stricter rule on everyone.

 

[ETA: The Codex standards have been lowered several times in recent years, from 500 PPM -> 200 PPM -> 20 PPM. So it seems that most European celiacs for the past few decades were able to recover, at least according to biopsy results, even while eating foods containing up to 25 times the currently allowed level of gluten. Many of these foods were made from specially purified wheat starch, which seems mind-boggling to more cautious North Americans.]

 

That said, I do think that manufacturers should also be required to put "may contain traces..." or "made in a facility..." in a place that's clearly visible on the package (preferably right next to the "Gluten-Free" logo), for those of us who are super sensitive.

Edited September 22, 2011 by Eleanor