New To Forum...think I May Have Glutened Myself

[Perskaya]

Hi, I am new to the forums. I could use some help...

I have not been officially diagnosed with celiac disease. I have been diagnosed by two doctors with IBS over the last 5 years, along with acid reflux, gastritis, and other gastric issues. I had a colonoscopy in April of this year, and the doctor told me that the biopsy results were negative (which from my understanding doesn't necessarily mean much since doctor's will not give a positive result usually unless total villous atrophy is present). I also have an uncle who cut gluten out of his diet 2 years ago and is now doing much better, and I see signs of gluten issues in my dad.

Most of my symptoms are gastric related (gas, bloating, usually constipation), but I am also infertile (have PCOS), and am struggling with (unoffically diagnosed) brain fog and potentially even ataxia.

I have been avoiding dairy since summer 2008, and just started gluten-free almost 3 weeks ago. I noticed some improvement in my digestive issues within a couple days; big improvements within a week.

Last Wednesday I accidentally glutened myself when I took communion at church--one small cracker (contained rye flour) about an inch wide. The next morning I had the worst constipation I have ever had, and lay in bed with what I think were muscle spasms. My energy level has been very low since then, and it's been almost a week.

This afternoon, I think I may have glutened myself again. Unfortunately this time it was a whole protein bar that I ate. I'm still getting the hang of this and when I bought some Clif Builders bars, I saw "wheat free" and my brain translated that to "gluten free". The glutenous item was oats, so I keep hoping that maybe I might get lucky and there wasn't much cross-contamination, but...

After I ate the bar, I began to notice I started burping. About two hours after eating the bar, I've started to feel some "chills" again.

My question is when I should expect the worst to hit? I never had reactions this bad before I started gluten-free. Is this normal?

I'm trying hard not to get a little freaked out here, since I had such a bad reaction to such a small piece of food a week ago--what is a whole bar going to do to me?! Especially since I am feeling the effects so much sooner!

[mamaw]

First off, accidents happen & people gluten themselves. Learn from the mistake & move on. Have you had bloodwork done?

Being gluten free is a learning process with trial & error. No one learns all this in a day, week or even a year. I've been gluten-free for years & I learn everyday still.

Some people get sick on a crumb & others are less sensitive.

I suggest starting off with foods you know are gluten-free , veggies , fruits, & naked meats. No coatings, marinades, no enhanced seasonings just plain simple things . You then can add your own spices , those you know are gluten-free.

You already learned a good lesson! Being wheat free is not gluten free. Its best to look for gluten free then you are safe.

There are many protein bars that are yummy & gluten-free.....ie: pure fit. zing bars, comfort bars, & many more.

Also you may have allergies to other foods & now are just realizing those issues as well as wheat & gluten. This is not uncommon.

Don't freak out just take a step at a time... stress makes the whole body rebel...

For me at the beginning I did not get rotten sick but now after years of being gluten-free I get sick fairly quickly & more extreme... everyone is different.

mamaw

[Perskaya]

First off, accidents happen & people gluten themselves. Learn from the mistake & move on. Have you had bloodwork done?

Being gluten free is a learning process with trial & error. No one learns all this in a day, week or even a year. I've been gluten-free for years & I learn everyday still.

Some people get sick on a crumb & others are less sensitive.

I suggest starting off with foods you know are gluten-free , veggies , fruits, & naked meats. No coatings, marinades, no enhanced seasonings just plain simple things . You then can add your own spices , those you know are gluten-free.

You already learned a good lesson! Being wheat free is not gluten free. Its best to look for gluten free then you are safe.

There are many protein bars that are yummy & gluten-free.....ie: pure fit. zing bars, comfort bars, & many more.

Also you may have allergies to other foods & now are just realizing those issues as well as wheat & gluten. This is not uncommon.

Don't freak out just take a step at a time... stress makes the whole body rebel...

For me at the beginning I did not get rotten sick but now after years of being gluten-free I get sick fairly quickly & more extreme... everyone is different.

mamaw

Thank you for the advice! I think that eating plain anytime I go out is going to be the way I have to go.

The reason I ate the protein bar is that I have terrible issues with protein. If I don't get high levels of protein every few hours throughout the day, I feel bad. Not sure if that could be a malabsorbtion issue of some kind...?

My nutritionist told me that I needed to up my protein levels way up. So the protein bar I ate would give me 20 g, which is why I was drawn to it and not careful enough, I guess. I've found lots of gluten-free (and DF) bars--but most of them only offer around 8-10 grams of protein. Those are barely worthy to be called protein bars! That just isn't enough for me. My nutritionist is telling me I need around 120 g a day.

If anyone knows of a high-protein, gluten-free, DF bar, that would be helpful to know.

And I don't believe I have had the blood work done, but to be honest, when I had my colonoscopy done, the doctor was real evasive in answering my questions. He wasn't even very open about what testing was done; very dismissive. I kind of gave up.

[ravenwoodglass]

If anyone knows of a high-protein, gluten-free, DF bar, that would be helpful to know.

And I don't believe I have had the blood work done, but to be honest, when I had my colonoscopy done, the doctor was real evasive in answering my questions. He wasn't even very open about what testing was done; very dismissive. I kind of gave up.

Bumble Bars are a good choice if you are not allergic to nuts. I like the cashew ones. Nuts and nut butters are good protein sources.

Also if your doctor just did a colonoscopy he wasn't looking for celiac. You need an endo for that one. If your going to get an endo done then you need to get back on a full gluten diet for the test to have any chance of accuracy. If you are in the US you have a legal right to copies of what he has in his file. Ask for a copy of the test results.

[mamaw]

I too, need to eat a lot of protein which doesn't always happen! I'm not a protein bar fan but I have found a few. The comfort bar has 15 grams of protein & very good. The cherry vanilla is REALLY yummy. Pure Fit has 18 grams & Zing Bars has 13 grams of protein. There are many others but we have found these three to be our favorites....

Some (many) doctors still don't understand celiac or gluten intolerance. It is very sad. You are not alone in feeling your doctor isn't helpful.

At times it is a battle we must take charge of by ourselves. But this is a knowledgeable ,caring group to help when no one else seems to get it...

blessings

mamaw