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Gluten Free For 4 Months, And Feeling Horrible Again...

gatheringroses

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gatheringroses Rookie
gatheringroses
Posted

Hi everyone,

I am feeling horrible still.

I was diagnosed as either having celiac or a severe gluten intolerance in May by elimination. I get sick from even a crumb.. Like all of you, I felt like a brand new person once I figured out what was going on.

Anyways, I've been really careful. I've avoided going out for dinner for the past month (mystery sicknesses were emerging), and I've started buying only organic food.

Now, I've been getting really sick lately. No gluten. And, I am cutting out soy (I am a vegetarian, this breaks my heart!), all nuts, and dairy (but, I've heard that goat's cheese is generally OK - is that true for most of you?).

Yesterday, I slept all day. Today, I slept in, finally got myself out of the house to school, and now I am incredibly tired. I want to go home and sleep.

Did anybody have a period of recovery followed by feeling really sick? (without eating Gluten)?

Did anybody develop allergies not directly after - but a few months after - cutting out gluten?

Are there any other vegetarian foods that some of you have had reactions to?

Any help/direction you could give me would be great. I don't really trust doctors anymore (it took them 22 years to even guess that was what was going on !!!), and I don't have any idea about what is going on..

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ravenwoodglass Mentor
ravenwoodglass
Posted

Cutting out the dairy and soy is a good idea. What are you using as a dairy replacement? If you are going with Rice Milk make sure it is not Rice Dream as that is not safe for us despite it being labeled gluten free. Are you taking any supplements, script or OTC drugs? Labeling laws are different for those than they are for foods. If you supplement has wheat or barley grass it can still be labeled gluten free but most of us will react to that. Look at anything you may have changed before you started feeling worse, toiletries, new significant other who eats gluten (they need to brush teeth before kissing) new crafts or home repair work that uses gluten ingredients a pet who eats gluten containing food are some examples of stuff that can get us.

gatheringroses Rookie
gatheringroses
Posted
  • Author

Cutting out the dairy and soy is a good idea. What are you using as a dairy replacement? If you are going with Rice Milk make sure it is not Rice Dream as that is not safe for us despite it being labeled gluten free. Are you taking any supplements, script or OTC drugs? Labeling laws are different for those than they are for foods. If you supplement has wheat or barley grass it can still be labeled gluten free but most of us will react to that. Look at anything you may have changed before you started feeling worse, toiletries, new significant other who eats gluten (they need to brush teeth before kissing) new crafts or home repair work that uses gluten ingredients a pet who eats gluten containing food are some examples of stuff that can get us.

Thanks for your reply, and the Rice Milk tip!

As far as I can tell, there have been no changes in my diet/lifestyle since I started feeling worse...

I was actually vegan before I realized the celiac thing, and I've never really been one for milk. But, thanks for the Rice Dream tip!! I'll stay away from it.

I am going to get my partner to brush her teeth after gluten... and, no new toiletries, no new home repairs, and my pets are eating low-grain food (lower grain than they were eating before, but I'll switch it up to grain-free).

I am taking Lamictal and Xanax (for the horrible side-effects that the allergy caused for my mood), but I am in the process of getting off of them since they are no longer needed... thankfully, I've got a bit of an addiction going on now after years of unneeded use...

Does anyone have any experience with Xanax or Lamictal? Or, suddenly feeling sick without any notable changes?

Thanks so much for pointing out some of the things that could be causing a reaction... I am going to go through all of my current products tonight to see if I need to do away with any of them.

Any more tips would be appreciated...surly, my doctor will not be of any help to me.

gatheringroses Rookie
gatheringroses
Posted
  • Author

! I think I figured it out! I just got a new prescription of Xanax. Maybe the generic form is not gluten-free!

ravenwoodglass Mentor
ravenwoodglass
Posted

! I think I figured it out! I just got a new prescription of Xanax. Maybe the generic form is not gluten-free!

Name brand Xanax is not gluten free. The generic, Alprazolam, made by Sandoz is unless they changed it recently. I have been taking it safely for quite some time. If your's is made by a different company put the company name and the words contact info into a search engine and you should get a telephone number to call the company directly and ask. I usually tell them I am allergic to wheat as wheat starch may be considered gluten free. I am not familiar with the other drug but you may want to call the company about just to be safe.

Since we can become more sensitive after we have been gluten free for a bit it may turn out to just be the kisses, pet food etc that you are reacting to.

gatheringroses Rookie
gatheringroses
Posted
  • Author

Name brand Xanax is not gluten free. The generic, Alprazolam, made by Sandoz is unless they changed it recently. I have been taking it safely for quite some time. If your's is made by a different company put the company name and the words contact info into a search engine and you should get a telephone number to call the company directly and ask. I usually tell them I am allergic to wheat as wheat starch may be considered gluten free.

I just called the pharmacy... Apparently, the brand they gave me is generally gluten free, but sometimes it might not be (?). Celiac disease is listed on my file, so it's pretty annoying that they didnt check. Oh well. At any rate, they were both helpful and apologetic, and offered to give me two pills for tonight from a company that is gluten free for sure. And, tomorrow, they'll contact my doctor, and ask for new medication for me. Phew.

Hopefully, that's the only issue.

I am trying to get my partner to use her own toaster, but she thinks there isn't enough space on the counter..... to which, I replied, "We will get rid of the blender!"

Roda Rising Star
Roda
Posted

I am trying to get my partner to use her own toaster, but she thinks there isn't enough space on the counter..... to which, I replied, "We will get rid of the blender!"

I really hope you are not sharing a toaster. This will gluten you. You will need two separate toasters and your's has to be one that has never had gluten in it. Hope you feel better soon.

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