Please Help Set Expectations For gluten-free Challenge

[SuperBeck]

Hello,

Can y'all please share with me what to expect during the first few weeks of stopping Gluten? I have no idea what to expect. So far, I feel quite exhausted and have been having palpitations and changes in heart ryhtym. Is this normal? I read someone posted that if they eat gluten they feel dizzy and out of it? That happened to me today. I was at a picnic and ate some deli meat and cheese and felt almost like I had slight acid-reflux, and felt very anxious. (Maybe the meat had some gluten?) My husband was trying to give me driving directions and I had to have him repeat them to me. It was so odd!

Are there gluten withdrawal symptoms many people experieince?

I'm a newbie, and SO happy to have this group to learn from. I'm 35 and have been ill for several years--anemia and transient hypothyroidism (when on little medication I became very hyper). Not until a month ago did I think my probs could be from celiac disease.

I was blood tested for Celiac last week, and have been feeling so awful (diarrhea, horrendous menstural flow, exhaustion, muscle spasms) I decided to go gluten free without the biopsy. My doc said he'd call me if any of my tests came back suspicious, so I'm anticipating a negative on the Celiac panel. I don't care about the biopsy ... if I feel better, that's good enough diagnostic for me.

So far, my diarrhea has come under control, and the rash on my hairline seems to have lessened. I am shocked to have changes so quickly!

BUT (and that's a BIG one), I had a really bad reaction to Flexeril (muscle relaxer) medication and wound up in the ER on Friday. I had only been gluten-free for a couple days (but I used to eat a TON of gluten.) Perhaps my body absorbed more of the medication? I was having a migraine probably b/c my blood pressure was so high ... they thought I was going to have a stroke so they gave me a CT scan. Thankfully it came down. It was very frightening. Are blood pressure changes normal while deglutening?

Thanks for sharing.

>|< SuperBeck

[Lisa]

I am not the best reference for you. But I would suggest that you check your meds to make sure they are gluten free.

If your intent is to be totally gluten free, it is a major challenge in the beginning. Anything that comes close to your mouth (shampoos, soap, facial crean) should be checked. Please post and "Nini" has the beginners kit for you to start with.

Many of us have has B-12 shots to get us over the malabnorbsion issues in the beginning. It was wonderful to me.

The posts are usually quiet on the weekends, plus this being a US holiday, you may not get a lost of hits.

If you have specific questions, let me know. It is a difficult journey in the beginning, but it does get better.

Let me know if you have question and I am sure that others will post in the beginning of the week.

Lisa

[CarlaB]

Chances are very good that you are still getting gluten. It may have been in the lunchmeat, or you may have gotten contamination from crumbs since people were making sandwiches from the lunchmeat. Like Lisa mentioned, it is very hard to become completely gluten-free, but don't let that discourage you!

I am one who gets dizzy and brain fog. I don't mind the diarrhea nearly as bad as the brain fog! I started avoiding wheat after a rotation diet. After I was off wheat for a while, I actually seemed to get sicker. I think what happened was that my body was healing and I was changing from it being used to a constant supply of gluten to not having as much. Many, me included, get stronger reactions to small amounts of it after being gluten-free for some time. So, as your body has been off of the major supply of gluten, you may be becoming more sensitive to smaller amounts.

Like Lisa mentioned, meds need to be checked. I doubt you were already absorbing more after a week, maybe your body is just reacting differently. I don't know about blood pressure.

Carla

[mouse]

Welcome to the forum. Like Lisa said you will probably get a lot of hits after the holiday is over. Do not use the family toaster, if you have already bought gluten-free bread. Your lipstick also has to be gluten free. If your husband has been eating gluten or drinking beer, do not let him kiss you unless he rinses his mouth out real good. I know I am forgetting a ton of stuff, but others will post to help you with this. Not all deli meat is gluten free. Kraft cheese can be trusted, because they always list wheat. Most of us use a lot of Kraft because they are so clear on their labeling. I have learned that when I go to a friend's house for a cookout to bring a dish that is safe for me to eat. And then I quiz the poor hostess if I see something that I THINK is safe - just to be on the safe side. My friends" are used to it and they don't want me to get sick. You also have to watch out for double dipping. In other words your husband can't spread the jelly on his bread, realizes he did not get enough, and then puts the knife back in the jar. Then you use the same jar. We have separate spreads and jellies and mine has a sticker on it. My husband also uses the counter in front of his toaster to make sandwiches and I use the counter in front of my toaster to make mine. It really sounds hard, but the system works. Someone else posted today that they also got accidently glutened and they also could not follow directions. So, I think that is a symptom for some. You will get the hang of this, but it just takes time. I hope you feel better soon.

[SuperBeck]

Thanks for the replies. I checked and it appears Flexeril is gluten-free. I'm never taking it again! (I would only use it once in a blue moon when the muscle spasms were real bad.) OH Yes PLEASE, I'd love the beginner's kit ;O)

WOW!!!! I hadn't thought about lipstick. I was wearing lipstick today ... Covergirl. Is there a particular brand are safe? Is there a special word in the cosmetic ingredient listing to look for? (I've read the list of things to avoid in food... just wondered if it would differ in make up.) I also used the family toaster. Hadn;t thought that a crumb could cause a problem. Goodness, I've got a lot to learn! I'm willing though.

Hugs of thanks to you all for helping others. I hope I get better, good, strong and knowledgeable so I can help like you do!

>|< SuperBeck

[ajay]

Hi SuperBeck,

It's going to be really difficult for awhile, and I see a lot of reading in your future! But hopefully you will also start to feel *so* much better. There are a ton of helpful folks in this forum (and a lot of useful books out there)-- you're not alone! It will get much easier as you learn what to watch out for.

Good Luck and take very good care of yourself.

[StrongerToday]

Remember also that as your GI tract is healing you will absorb medications differently.

Hope you're feeling better soon!