Feeling A Little Discouraged.....

[Luvbeingamommy]

I have been strictly gluten free since Feb. I did not get a positive biopsy, but I had inconclusive blood work, the main celiac gene as well as a gluten sensitivity gene linked to neurological problems, I had a stroke in Nov. My neuro thinks it was related to the gluten. My GI said he can't tell me I don't have Celiac and I am not going to risk staying on gluten longer for more testing, as I had a stroke, so most likely I do.

My main symptom was oddly enough extreme nausea, with some D. It got better, I won't argue with that, A LOT better. I am still dealing with it though, on and off. I don't know whether I have another food issue going on, I've been physically checked over extensively after the stroke.

So I am wondering, more time or another food issue?? I tried dairy and didn't see much of a difference. I did score a 8 on enterolab for dairy, but over 10 is considered positive...so probably not that??

Another thought I had is cc issues. I really haven't bought all new pans or anything, i try to just use the stainless steel ones, but could that really be the issue??

Any advice would be appreciated, thanks!

[Luvbeingamommy]

Ohh I was just thinking, last night we had spagetti.....we don't have a lot of pans, so my husband used a cast iron big pot. Well I was just thinking we haven't made bread, well maybe, but I know we have made regular noodles. Would this be enough to make me sick the next day?? My husband doesn't think so.....I don't know, but I feel SO nauseous today...I even took a half a zofran and I haven't done that for awhile, think I need the other half too.

[dilettantesteph]

What do you mean by a strict gluten free diet? I found early on that I couldn't handle gluten free foods that were not made in a strictly gluten free facility. Could that be a problem with the noodles that you had?

[Takala]

People who are gluten intolerant frequently, but not always, have secondary intolerances. The most common ones are to soy and to lactose, the milk sugar. Some people after they are healed up can re introduce dairy if it is lactose free or nearly so, such as dairy from hard aged cheeses or properly processed yogurt.

You can't use cast iron unless it is dedicated to being gluten free, it's too porous and will cross contaminate. You can put it in the oven on "clean cycle" and burn off all the old coating and reseason it. If you have a shared household, you need your own dedicated gluten free cutting board, colander, cast iron, toaster, etc. I got new baking pans because the old ones were very old and had a lot of old junk burned onto them.

Not to be a snot, but your husband should be the last one you listen to on whether or not something has the possibility of making you sick. Even my husband, who "gets it," has gotten me several times inadvertently. My favorite was when he was using hand lotion after a shower, and then scooping ice barehanded into a drinking glass a few minutes later. Good thing I have an acute sense of smell, because he was insisting that it couldn't be happening. I buy his toiletries now. I've also caught him not always washing his hands after touching cat food, so I changed the cat food to wheat free. Another time it was a package of "gluten free" chips that turns out the manufacturer uses oat fiber and doesn't always disclose it on the label. The worst time was when the dog food manufacturer changed ingredients, and we had a lapse in intense label scrutiny- that got both of us, as the dog was scratching himself silly, and it's one of these types of dogs that drools a lot. He reads those labels now. None of it was deliberate, but you can't expect a normal person to be that hyper vigilant.

Don't forget to be sure any medication you are taking is gluten free.

[Luvbeingamommy]

We are a shared household, I did buy our (my 2 yr old son also was dxn) own toaster and some new cooking utensils. I found a brand new baking stone at the thrift shop, never used in the box, that is ours. I have yet to buy all new pans, *just* for gluten free. I think I will do that, I didn't know if really that tiny amount might affect us, but I know it could. So new pans is on my list and I will mark them gluten free. I shouldn't have to worry about the grill, wouldn't it get hot enough to burn anything off??

I guess I do not buy things that are ONLY prosessed in a gluten free facility. Is that a good thing to do for now?? I know my bf said her brother has Celiac and he cannot tolerate anything not made in a gluten free facility. I didn't know if I would be that sensitive.

I am sort of thinking of doing the enterolab test for soy, egg, and yeast. I got an 8 on dairy, so I think that's okay (over 10 was positive).

How do I know if my medication is gluten free?? I take a few perscription medications, call a pharmacist??

Thanks for the help, this is all new to us.

[Roda]

As for the prescriptions, yes call the pharmacist, but alot do not know. I always contact the manufacturer. I also have a habit of calling before I get my refils since my mail order pharmacy will change manufactures on the generics at times. So far I have been good on all my meds.

[kareng]

My pharmacist doesn't know about gluten. He even told me that the amount in them wouldn't be enough to make a difference. He tells me the company name, phone or address if he has it, and I check with the drug company. Walgreens doesn't let them on the internet or to make a long sidtance call to check meds. Crazy, huh?

[Roda]

Walgreens doesn't let them on the internet or to make a long sidtance call to check meds. Crazy, huh?

I was told this too. How stupid. I now call the pharmacy to verify the company who makes the meds and contact the company too. If the pharmacist knows about gluten it is just an added bonus, but I go with the companies answer.

[sa1937]

My pharmacist at RiteAid doesn't understand either but he printed me off a list with my meds and the ingredients they contain. I was mainly concerned about one that was a generic and I checked glutenfreedrugs.com and the company was listed.

If it's a name brand drug, I can google it and check it myself (like Restasis, for example, which is one I am on).

Actually googling a product once is how I came upon this forum!!! It's amazing how often celiac.com comes up.

[ravenwoodglass]

My pharmacist doesn't know about gluten. He even told me that the amount in them wouldn't be enough to make a difference. He tells me the company name, phone or address if he has it, and I check with the drug company. Walgreens doesn't let them on the internet or to make a long sidtance call to check meds. Crazy, huh?

Time to transfer those scripts to a pharmacey that will check. A pharmacists JOB is to make sure that he meds he or she are giving out are safe for the person they are giving them to. I'm surprised the FDA lets them get away with that.

In addition if you have a reaction to a med do report the reaction to the FDA. If the med turned out to have gluten that caused the reaction be sure to tell them so. If you do a search for FDA Drug reaction the form should come up.

[Takala]

I tell them (pharmacies) that I am ALLERGIC to wheat along with the other allergies I have, and if I had some joker try to tell me that they couldn't bother to check, then I would say sorry, I'm not risking my life here just to have you make a bigger profit. I don't know if by law it's in all states, but in this state they must offer you a pharmaceutical consultation at the check out, and I always take it so we can check again. I also tell the doctor to write on the script itself, NO GLUTEN or allergy to wheat, rye, barley. While it's not an "allergy," the words do get their attention.

It's the pharmacist's JOB to check for cross reactions to medications, they know more than a lot of doctors.

No, gluten will not burn off a grill, and you need to scrub it off and keep your food away from it if it's being used to cook gluten foods, or wrap your food completely in foil. . Also, some CHARCOALS use gluten as a binder and you need to check that.