Newbie Need Help!

[compucajun]

I'm fairly new to this, I've tried to be gluten-free for about 6 months. My blood levels of the antibodies were very high, and my small intestines are fairly messed up, they have no villa and do have fishers. I have an incredibly low iron level, osteopenia (probably spelled that wrong - I can do math but can't spell), etc. Am getting better in almost all aspects!

Reading the other posts has helped me somewhat, but I still have a few questions:

- How long after eating a "bad" food do most people feel it? I was glutenated somehow, and I don't know if it was something I ate that day, or the day before. I suspect the salsa I ate about 24 hours prior to having stomach symptoms. Two days later, I noticed a small DH "bump". Does the timeing sound about right?

- I had a CT scan this morning. Since I am allergic to iodine, I had to be pre-medicated with benedryl and steroids. Then, they shot me full of dye. I feel terrible! Dizzy, light-headed, sleepy, lethargic, just generally bad. Could this be due to gluten? And, it has been about 6 hours since the procedure, and I still don't feel "up to par".

- How do you deal with prescription medications? My WALGREEN'S druggist told me he couldn't help me. After I purchase the drug, I should go home and contact the manufacturer to see if it is gluten free. I find this absurd, because once you take the drug out of the store you can't return it - and THEN you find out it contains gluten. My insurance covers generic drugs at a much better rate than non-generics. Once you determine a particular generic drug is OK, the pharmacy changes suppliers and you have to start the process all over again. I am to the point of just not being concerned as to if a drug contains gluten.

- My DH has improved since I am gluten-free. Is there a chance some of my other related issues also improve? For example, hypothyroidism, Sjorgens, depression, osteoporosis (I know the damage done will not be reversed, but will the disease "slow down"), osteopinea,

Thanks in advance for all of your help!

If anyone needs a good doctor in south Louisiana, Rachel Murray is the BEST!

Janet (Covington, LA)

[diane64]

Welcome!

I can't answer all of your questions. I do ask at my pharmacy about medications being gluten free. They have been really good about contacting the drug company for me. Ask each time, as the suppliers change!

I think I was glutened for the first time last week. I am not sure what it was that I ate- I pretty much eat the same things for breakfast and lunch and never take any chances. I think it was cross contamination from a gluteny food that my son eats. Anyway, I had the same symptoms come back (the ones I had before I went gluten free). They were spread out over several days- stomach pains, fatigue, confusion.

Good luck!

Diane

[AzizaRivers]

Hi Janet! Welcome to the journey.

As for reaction time, this varies greatly. Some people will feel sick pretty much immediately, others react within hours, and some days. For me, I will start to feel "off" a few hours after eating something bad, and I will wake up sick the next morning. That's with CC or small amounts. I haven't had a major glutening since I went gluten-free a few months ago so I'm not sure what that would be like. So basically, everyone is different.

For the medications, you can try this if the pharmacist says they can't help you: when you're filling a prescription, ask what the current supplier is and the name of the generic they are currently using. Then do your research on that, call the supplier if necessary, and then go to actually fill it once you know if it is safe. For me, none of my medications have generics out so I always know they're okay. For over the counter stuff I always get the name-brand (assuming I know that's safe). I know there are ways to check the generics but it's too complicated for me since they can always be changing ingredients. You often will have to check name brands too because their ingredients can change.

If you haven't yet been told by anyone, make sure you replace old pots and pans and cookie sheets that are scratched, wooden spoons, wooden cutting boards, etc. because they can harbor gluten. Give everything in your kitchen a good scrub and clean out any crummy crevices if you have them. Keep all gluten-free foods separate from the regular stuff and do not share a toaster, pasta strainer or condiments with gluten-eaters as it's easy to spread contamination that way.

[eatmeat4good]

I have DH too and if you felt a bump it could be from iodized salt which activates the antibodies. If there was salt in the salsa, it is entirely possible you had a reaction to it. I have made this mistake several times. The reaction for me starts the next day and lasts about 3 to 4 days. Sores can take longer to heal, but stop hurting sooner.

Also, I have some pharmacisits who are helpful and ones who are not. I tell them I can't buy it if they aren't willing to check. So far, that has done the trick. They check everything else, why not gluten? It isn't difficult and doesn't take long. To help them out though, I do call ahead or go when they won't be busy. I just don't accept that I have to buy a drug that might be bad for me. If I have to I will get the information from them on the maufacturer and call myself. I try to get meds that are gluten free by telling my Dr. it has to come off the list of safe gluten free medications.

Stay strong.

[kareng]

I had this problem with Walgreens so I switched to Target. What I did at Walgreens was call after my script was filled but not picked up. I got the name of the company and the drug. Sometimes they could give me a phone number and a drug lot number of some sort. If you pay for the meds, you can't return them & your insurance will not pay for more.

Also, the pharmacy probably won't fill the script so soon after it just did. If these are pain killers, you could end up on the pharmacy's list of " drug seekers".

If it's a med your are taking everyday, the little bit will add up & harm you. No matter what Walgreens corporate policy says.

By the way, I wrote to Walgreens and they referred me back to the pharmacist to resolve this. Walgreens does not allow the pharmacist access to long distance phone, 800 phone numbers, or Internet except the approved and apparently pre-programmed numbers for insurance.

[Takala]

If the pharmacist says "they can't help you" (and not the dweeble, clueless, sometimes nasty counter clerks) they may be breaking some sort of state law, and certainly their code of ethics which is akin to the physician's "first, do no harm. "

In this state they have to offer a consult with the pharmacist if the customer needs one. I have them flag the wheat, barley, and rye as an "allergy" in their records, just like the other things I am allergic to, and God Help Them if they try to give me any crap about "no way to check it" - that is their job. Just like they are supposed to check for drug allergies, interactions, etc. I would suggest you (and any one else here reading this who has had a chain pharmacy try to do the same thing) contact your state's Attorney General's office and ask where to file a complaint. If some dishonest S.O.B. tried telling me to purchase a drug and then take it home and check for allergens, I'd probably take out my cell phone and call the state's offices right there in front of them, and ask what I should do about the pharmaceutical fraud being committed. What a bunch of bleeping crooks.

You really have to get more assertive with these con artists or they'll keep stealing from you and your insurance, if they don't kill you first.

The last script I had filled they tried this crap and I made them open the package, which they were balking at, and get the name of the manufacturer which I had to call, and then got the run around to having to call the distributor - I ended up going home without it and having to do internet research on the ingredients and gluten free med lists because, of course, the manufacturer's hot line was closed for the day in another time zone. And I took the script to a different store the next day when I found out it was okay. B*******s.

The good news is that yes, some of your other conditions will improve, because you will get better and better at not being malnourished, which is contributing to all the other problems. What you are feeling now is not gluten but a good old fashioned allergy attack from getting injected with something that doesn't agree with you. I know that if I have to take benedryl/steroids the initial reaction I have for my body is usually "whoopee ! yeehaw !" because they knock down inflammation and free up my joints or allow me to breathe. Of course coming off the steroids, even for a short course, is such a miserable experience, plus the steroid side effects, sometimes it acts as a sort of un - motivator. ( I had massive poison oak 3 years ago and had to take a lot of both. )

[TooManyHats]

I have DH too and if you felt a bump it could be from iodized salt which activates the antibodies. If there was salt in the salsa, it is entirely possible you had a reaction to it. I have made this mistake several times. The reaction for me starts the next day and lasts about 3 to 4 days. Sores can take longer to heal, but stop hurting sooner.

Also, I have some pharmacisits who are helpful and ones who are not. I tell them I can't buy it if they aren't willing to check. So far, that has done the trick. They check everything else, why not gluten? It isn't difficult and doesn't take long. To help them out though, I do call ahead or go when they won't be busy. I just don't accept that I have to buy a drug that might be bad for me. If I have to I will get the information from them on the maufacturer and call myself. I try to get meds that are gluten free by telling my Dr. it has to come off the list of safe gluten free medications.

Stay strong.

CT scan contrast contains iodine. I CAN'T believe they didn't ask you this!!! Beware next time! I hope you feel better soon.

[eatmeat4good]

Oh my God, that would definitely activate the lesions. I had no idea that CT contrast contains iodine. That is terrible. Thank you for pointing that out for us. I think everyone with DH needs to know that. Thank you again.

[TooManyHats]

The IV contrast given when you get a CT scan contains iodine. The oral contrast does not. I work in Radiology, that's how I know. That's usually a question they ask, are you allergic to shell fish? That's why they ask.

[compucajun]

The IV contrast given when you get a CT scan contains iodine. The oral contrast does not. I work in Radiology, that's how I know. That's usually a question they ask, are you allergic to shell fish? That's why they ask.

Strange story. I was NOT allergic to shell fish until I had an IVP about 20 years ago and had a reaction to the dye. As the dye was going in, I got hives, started coughing, trachea started swelling, etc. The rad tech went out to get benadryl, and when she came in i was bleeding from my ear and she panicked! I had a hive in my ear, and scratched it, and that was bleeding but she thought I was going into Anaphylactic shock. (I know I can't spell it correctly - I am terrible at spelling, but am a math teacher!)

After that incident, I could not eat any type of shellfish, sit in a restaurant where seafood is served, or even use iodized salt. I live in the New Orleans area, so that was difficult. Now, I can use iodized salt, and I can sit in a restaurant where other people are eating shellfish without a problem, thank God.

Thanks for the information. I will speak with my doctor and ask him if we can use some type of alternative dye for my next check up - hopefully that won't be for at least a year.

Happy New Year!

[compucajun]

THANKS everybody!

I feel much better today - no headache or stomachache and I have more energy!

I am going to change my pharmacy. I like the convenience of a large chain, but I must take medications that don't contain gluten.

Next time I have a CT scan, I will definitely ask about a contrast which does not contain iodine, or have no contrast at all.

Thanks again for your help.

Happy New Year!