gluten-free For 3 Weeks And I Think I'm Feeling Worse!

[AliceW]

OK, this is weird!

As I've stated in previous posts, I had negative conventional bloodwork but tested positive for anti-gliandin antibodies and TTG through Enterolab, so I started an extended gluten-free trial in mid-December.

I noticed no real change after going gluten-free for the first 2 weeks or so. Then, during the last week I swear I've been feeling WORSE than I did before! My gas and constipation have worsened (I just ate lunch out with some work colleagues and am doubled over in pain right now), and on top of that I'm been having the worst insomnia I've had in two years for the last week or so (it used to be a big problem for me in the past), AND I feel totally spaced out. I've also been feeling sort of nauseated off and on.

What gives? I'm trying to pay attention to how my body is reacting to this diet, but on the other hand I don't want to over-interpret things...anything could be causing these symptoms.

Could this be related to the diet? And if so, should I start eating gluten again? I'm not sure what to think....

Alice

[AndreaB]

Are you sure you haven't been glutened? If you've eaten out that is a high possibility. If you eat out frequently it could be a lot of cc's getting to you.

Are your personal care prodects gluten free? After you've made sure you have nothing with gluten, rye, spelt, barley or oats in it (check makeup, toothpaste, hair care). Scratched non-stick pans, shared toaster, double dipped condiments, preparing gluten food for others, plastic collander are other things to check.

If all traces of gluten are out then I'd be suspicious of soy, then dairy. Those are the top three instigators.

If you have elevated ttg you don't want to go back on gluten. Your body is already attacking and you could end up with worse problems.

Start keeping a food diary to try and track problems. It could be beans as well. It can take up to 2-3 days for a reaction so you would need to be very diligent and thorough with it.

Those are ideas I have off the top of my head. If you want to share more, we can all try and help you troubleshoot.

[AliceW]

Andrea--Thanks for the feedback. I think the most likely explanation is that the increase in symptoms I've been experiencing is unrelated to my having just started the gluten-free diet. It is a little weird, though.

I will look into diary and soy as possible culprits. I think I am going to try an elimination diet concurrently with my gluten-free diet to see if i can identify other foods that may be causing me problems.

Alice

[jazminecat]

Andrea--Thanks for the feedback. I think the most likely explanation is that the increase in symptoms I've been experiencing is unrelated to my having just started the gluten-free diet. It is a little weird, though.

I will look into diary and soy as possible culprits. I think I am going to try an elimination diet concurrently with my gluten-free diet to see if i can identify other foods that may be causing me problems.

Alice

Alice, I agree that cross contamination is a huge issue. when i first started, I was stunned at all the places gluten hides. I also did a massive elimination diet with the guidance of a good naturopath, and cut out soy and dairy as well. I can just now, after one year of healing, eat soy in small amounts, and still have challenges with dairy but can eat it with some probiotics. it does sound though like you are being glutened. What did you have for lunch and where did you go? I hope you feel better soon!

[happygirl]

Alice, I'm going to have to chime in, of course :)

if you hadn't eaten out at all, that would be one thing. but considering that there are many of us that are ONLY glutened by eating out (bc we have the diet at home down pat), I would be highly suspicious of the connection between eating out and your symptoms. small amounts of gluten can do a lot of harm to some. plus, it is entirely possible to have ups and downs...its a roller coaster ride. My path to getting better was not a straight shot (i.e., not continuous improvement, plus crazy symptoms would pop up!) and I think others would echo that sentiment.

Good luck on your elim. diet. Let me know if I can help. I've been there before....many of us have! We are happy to help in any way.

Laura

[Fiddle-Faddle]

You are probably doing better than I did when I first went gluten-free, but just in case--it took me several weeks to realize that there were several gluten-containng foods that I was eating that I didn't realize were gluten-containing! You are probably already avoiding these items, but I'll list them for any other newbies who might be making the same mistakes I did.

Items that have gluten when you think they wouldn't:

Soy sauce (La Choy is gluten-free, but the soy sauces they use at Chinese Restaurants is NOT))

Rice Krispies

Corn Flakes

Corn Pops

"Lite" ice creams

tuna salad from the deli

some salad dressings

Buckwheat noodles (the kind I was eating had wheat in it)

Most fast food french fries (even if they aren't coated in wheat, they are cooked in the same fryer that the breaded items are fried in)

Pringles

Many flavors of Doritos

Some deli meats

Oatmeal (discussed in detail on www.celiac.com)

[AliceW]

Thanks for the feedback, everyone. I am feeling much better now. It was just strange; the second week gluten-free I was feeling great, and then I felt terrible again for no apparent reason.

I wish I had a crystal ball I could look into and just know for sure what I can eat and what I can't! It is so hard to tell, because it seems like reactions can be delayed, and some foods are OK but only if not eaten in combination with other foods, etc. It feels really overwhelming sometimes (as you all know well!). Some of it may not ever have anything to do with food; for example, I have a hiatal hernia, so I'm sure some of my GERD results from that.

I just want to get rid of my reflux and the terrible gas pains I get way too often. I am thin, but my lower abdomen is often so bloated that my stomach is nowhere near flat. I always start out feeling perfectly fine every morning, and then by about 2 pm (after lunch, seemingly no matter what I eat) I am bloated and gassy and reflux-y, and that lasts until I go to bed. Sometimes I think that if I could just stop eating althogether I would feel great.

As for the possible glutening in the restaurant yesterday: I think i did everything right, but maybe I could have missed something. I had two small pieces of cheese and a few grapes from a cheese plate (taken from the other side of the plate from where the slices of bread were), then an arugula salad with pears and balsamic vinaigrette. For the main course I had poached fish with lentils, fennel, and tomato. I called ahead to ask the chef if there was "any flour or bread crumbs of any kind or any soy sauce" in the entree and salad, and he said no. ?? Can you think of any possible CC issues I might have over looked?

Anyway, thanks again for all the support.

Alice

[AndreaB]

CC could have happened if the person who handled the cheese bread plate handled the cheese after the bread.

[eleep]

You may also be reacting to the cheese -- which could be either a casein (milk protein) or a lactose (milk sugar) intolerance. You can figure this out by doing an experiment with lactose-free milk and seeing if you react to that in comparison with other kinds of lactose-containing dairy.

Or you could get tested for casein intolerance through Enterolab.

Lactose intolerance can be a temporary thing for celiacs. The tips of your villii secrete the enzyme (lactase) that breaks down lactose. When your body is more fully healed, you may gradually be able to reintroduce dairy into your diet because the villii have grown back. Casein intolerance is a permanent issue -- my understanding is that this has something to do with the fact that the molecular structure of casein is similar to the molecular structure of gluten.

I had to cut dairy out of my diet for about six months and I still sometimes react a little if I go overboard with soft cheese and stuff like that.

[Fiddle-Faddle]

Was there a sauce on the poached fish? Usually restaurant sauces are made with flour.

[AliceW]

Was there a sauce on the poached fish? Usually restaurant sauces are made with flour.

Hi FF,

Yeah, because I love to cook I know that sauces are usually thickened with flour . (I thicken them at home with cornstarch now. ) But the fish yesterday was in a light, clear broth, and I DID ask whether or not there was ANY flour in the recipe, and they said no.

What else could I have done, beyond choosing something that seemed safe and then asking to be sure?? I guess the next step would be not to eat out ever, or to ask for absolutely plain meats and vegetables when I go out, but the thought of doing that forever that makes me want to cry. I live and work in New York City and don't have children, so my social and work life is absolutely FULL of restaurants. I can't see staying out of them completely without turning my life completely upside down.

Do any of you eat out sucessfully on a regular basis? Do you have any tips I should know about?

(Also, to those who suggested that the cheese might have been the problme: you may be right; I thought of that too after the fact. I guess i'd better experiment with diary avoidance and see if it helps.)

Thanks again to everyone to being so helpful. I wish i had more to contribute in return, but I am pretty clueless at this point.

Alice