I Don't Think I Am Doing This gluten-free Diet Correctly

[Tina76]

Hi! I have started eating gluten-free almost two weeks ago, and only feel marginally better, if at all. I don't seem to go to the bathroom as often and my constant dull headache is gone, but the joint pains are nowhere near where I hoped they would be by now. One day I felt TONS better, I could actually get up without much pain, and I thought I was onto something, next day it was back to feeling 80 yrs old.

I have definitely not eaten anything that contains gluten (reading labels, making sure nothing is even processed on shared equip) but I will admit I felt funny about going as far as having my own condiment jars or butter containers, so I still used those and tried to just stay away from the areas where i saw crumbs. I know, that's probably dumb and completely counterproductive, but I guess I thought that cutting out 99% of gluten would at least show major improvement? I have also not really looked at where I am making my sandwich (Udi's)and instead of wiping down the counter after my husband used it, again just tried to find a spot that looked crumb free.

I know it's dumb, but without knowing for sure if I have gluten intolerance, I feel weird being so "picky" about everything and asking everyone to not use my jars and such, even though I know they wouldn't even mind. I guess I'm afraid of finding out gluten wasn't the issue afterall and then everyone did all this stuff for nothing.

Long story short, I'm not really getting anywhere like this right? Maybe I should eat nothing but watermelon for a week to see if it gets better. I find cross contamination so difficult, it's like wheat is everywhere once you're aware of it. Might be easier to just go over the top with it for a while and stay a mile away from it...

I guess my question is, is cross contamination bad enough to still cause ALL of the intolerance symptoms? Maybe I am underestimating this..

Tina

[GlutenFreeManna]

I guess my question is, is cross contamination bad enough to still cause ALL of the intolerance symptoms? Maybe I am underestimating this..

Tina

Yes, yes and YES! One tiny invisible crumb and I am sick in bed with joint pain (and the unpleasant GI symptoms) for a week. You would not be going overboard at all to ask for your own gluten-free countertop space, getting a new toaster fro gluten-free only, make your sandwiches ON A PLATE instead of the counter, get a new cutting board, don't use scratched non-stick pans or cast iron used for gluten, use foil or parchement paper on your cookie sheets, etc, etc. If you must share condiments, at least get the type that are squeeze jars instead of the ones you dip the knife into.

Also I really hate to tell you this but even with all these changes my joint pain took about 6 months to completely go away. It did however improve drastically within the first month. I did not know about all these cc issues for my first few months so perhaps my join pain resolution was delayed by my continued cc. Bottom line: you need to get strict and you need to try to be patient, but the more strict you are early on the better.

[Roda]

Yes, as the pp said cc can keep you from making progress. What you need to do is have a good thorough cleaning of your kitchen. Mark all of the jars that have been shared somehow so you know not to use them and let the rest of the family finish them up. Get you new ones for yourself or replace with squeeze bottles that way everyone can share. We have one section on the counter that is just for the gluten eaters in the house that they can make their toast sandwiches etc but the rest of the kitchen is for gluten free. Get your own toaster. I found one cheep enough at Dollar General for about $10.00. You will probably want to replace any sugar/brown sugar, spices/herbs if they are contaminated double dipping after being in the flour.) Replace any scratched non stick pans, wooden spoons and cutting boards. I would refrain from any baking with regular flour since it can remain airborn for about 12-24 hrs then settle down on the counter. I did replace some of my cookware that was warn and got a few new things. The old my hubby keeps for the few gluten things he still cooks, mainly toasted cheese and pasta. Oh, you need a new strainer for your gluten free pasta. I replaced my waffle maker and old bakeware that had been used for ages. I'm sure I've overlooked a few thing, but others will chime in.

[domesticactivist]

It sounds like you *know* what the problem is - you haven't really eliminated gluten from your life! It's not selfish or wrong to get your own condiments! It's absolutely critical to your health. I've written a blog post about how to make your house 100% gluten-free.

With very careful family members, I do think it's possible to stay healthy with shared household. Some people maintain shared kitchens, but my household decided that wasn't safe enough for us.

[domesticactivist]

By the way - I noticed you didn't have a diagnosis. If you are intending on seeking a diagnosis don't go gluten-free yet! You need to be eating LOTS of gluten to get a positive diagnosis!

[Tina76]

Ahh so I WAS kidding myself, I had a feeling Well, I guess that could also be a good thing, because I am actually seeing my family doctor on Tuesday and will ask for the blood test. So I have been "mostly" gluten-free for about two weeks now, and getting an appt for lab tests usually takes a couple of weeks. So 2 weeks of little gluten and the next two weeks of full gluten again, that should give me an accurate result right?

And can a family doctor run these tests, or do I have to see a gastro doctor?

Has anyone had problems with doctors just flat out refusing to order them? I want to be as prepared as possible because the last time I told him about my joint pains and incredible itching, he just said "hmm, that's odd". He looked clueless, whereas I was already suspecting Gluten back then but didn't say anything. I don't want him to run a whole lot of other tests first, I want to start here and rule this out. Or preferably actually get diagnosed with this because it's the only condition that explains my symptoms that does not require heavy medication...

[lizard00]

Your family doctor can order the test. Make sure they do a complete celiac panel. You would think by now I would have this info saved somewhere, but I don't. Lots of other people here can give you the complete list of tests that are involved in a celiac panel.

I have never had any problem with my doctor running a test on me. I love my doctor though, and she listens to me when I tell her what's going on. If they hassle you, don't back down. It's your health, not theirs.

[GlutenFreeManna]

Here: Open Original Shared Link

Print this out, highlight in bright highlighter the names of the tests you need. Give a copy to your doctor to order the tests and keep one copy with you for when you go to the lab for the blood draw. When you go in for the blood draw show them the page with the highlighted tests to double check that everything has been ordered that you need. Wait until the blood test results come back to decide whether to go gluten free again or stay on gluten for more testing. If you need a biopsy you will need to be on gluten for that too. If the tests come back negative that does not mean for sure you don't have celiac. Get back on the gluten-free diet and do it strictly to find out if it helps.

[Harpgirl]

Hey, I have a question related to this thread as I'm on my second day gluten-free. I told my husband this morning, that I needed a new toaster and he (Mr. Extra Thrify) said that he would clean it out, even power wash it (which in my opinion would break it), and that he wouldn't use it anymore. Is this enough? And if it's not, can someone give me some documentation to prove why not? He would need to see it.

I had an Udi's bagel with Nutella on it for breakfast this morning. It was pretty good, though rather dry. I probably would have enjoyed it more if it was toasted.

[danzn16]

My doc said it takes 3 weeks to get gluten out of your system. So this, as well as the cc risk, could be why you haven't seen major changes yet. But personally to me, if my headaches and GI discomfort was decreased or gone, I would say that's a major improvement and step in the right direction!

[Roda]

Hey, I have a question related to this thread as I'm on my second day gluten-free. I told my husband this morning, that I needed a new toaster and he (Mr. Extra Thrify) said that he would clean it out, even power wash it (which in my opinion would break it), and that he wouldn't use it anymore. Is this enough? And if it's not, can someone give me some documentation to prove why not? He would need to see it.

I had an Udi's bagel with Nutella on it for breakfast this morning. It was pretty good, though rather dry. I probably would have enjoyed it more if it was toasted.

Definately get a new toaster. You can pick up one that is pretty inexpensive. I got mine at Dollar General for $9.99 and myself and my 6 year old use it. The old one is all for hubby and my parents. I don't think powerwashing would do the toaster any good. I would worry about it shorting out. At any rate it probably would render it useless and you would have to buy another one anyway, if not two. You could always buy these bags you put your toast in that would allow you to use the toaster, but I think buying a new toaster for yourself would be cheeper in the long run.

[GlutenFreeManna]

Hey, I have a question related to this thread as I'm on my second day gluten-free. I told my husband this morning, that I needed a new toaster and he (Mr. Extra Thrify) said that he would clean it out, even power wash it (which in my opinion would break it), and that he wouldn't use it anymore. Is this enough? And if it's not, can someone give me some documentation to prove why not? He would need to see it.

I had an Udi's bagel with Nutella on it for breakfast this morning. It was pretty good, though rather dry. I probably would have enjoyed it more if it was toasted.

Are you diagnosed or are you just trialing the diet to see if it helps with symptoms? Either way you cannot use the old toaster. No matter how well hubby cleans it it won't be safe. As the PP said you can get toasters cheap! I got one for $3 on black friday. It's nothing fancy but it works just fine. You should be able to get one for around $10. However, I was also going to suggest that if you are just doing a trial diet and are not wanting to buy a new toaster there are other ways to toast your bagel. Putt it open faced on a cookie sheet lined with foil and turn on the broiler. Watch it closely as it will start to brown in just a minute or so. It's not the same as a toaster but it works just fine. And for an added benefit you can put butter or cheese (if you can eat cheese) on the bagel before toasting it (it won't get crispy but it will be nice and melty...mmmmm). Udi's bagels make good mini pizzas too. If you have a toaster oven you could use that too, just be sure you have foil on the old pans.

[Harpgirl]

Okay, Thanks And I think I'll try that broiler trick in the morning, but I guess I'll have to use the stick butter since we've used the tub butter for regular toast. Fortunately, my lactose intolerance disappeared again 6 months ago.

Forgot to answer Glutenfreemanna's question. I'm not diagnosed yet, but I had my blood drawn Friday morning. I decided to try the diet right after that anyway, and so far, I'm doing much much better.

[Tina76]

Thanks everyone for the advice, I checked out the blog and it was so informative! I've definiately not been that careful and will have to be once I get back on gluten-free.

As advised, I've had the blood test ordered and scheduled it for early July to get enough gluten back in me in the meantime. Since I've never been 100% off Gluten and I was only "mostly" off of it for two weeks, i hope that I still have plenty in there to show up by then.

The thing is, I think I take a long time to truly get miserable from it. The joint pain is definitely at its worst again, and the constipation is back. I am constantly bloated and retaining water again. BUT, (gladly in a way) I don't have any of the brain fog I had before and I was kind of hoping I would have a definite sign from my first few pieces of bread like stomach pain, but nothing like that. I have so many symptoms, but really none of the classic ones like stomach cramps and diarrhea. So once again I am doubting that I even have this ...yet I am so hoping that this is the cause of my joint pains because I will gladly give up gluten forever if it fixes that problem.

As for the test, i fear that it's not the correct one either. He ordered Gliandin AB IGA. I looked it up and can't really tell if that's the correct one or not, or if it's only one of the ones needed? I figured if it's not correct I can always have the rest done later, but I hope that that test is at least a good clue?

Tina

[kareng]

Get the right tests done the first time. Insurance might not pay the second time and who wants to wait longer? Send or take this to the doctor:

Open Original Shared Link

Antibody Testing: Only A First Step

To help diagnose celiac disease, physicians first test blood to measure levels of certain antibodies. These antibodies are: