Get A Physical! What A Eye Opener.

[Guest GITRDONE]

I WAS DIAGONOSED 1-1/2 YERS AGO WITH celiac disease WITH A BLOOD TEST & A BIOPSEY. AND DID MY HOMEWORK ON THE INTERNET TO SEE WHAT IT WAS ALL ABOUT AND "THOUGHT" I WAS DOING ALL THE RIGHT THINGS. I HAD BEEN MISDIAGONESD FOR 15 YEARS WITH IBS. SO AFTER A FEW DIET CHANGES I WAS FEELING BETTER. THEN TODAY I WENT INTO YOUR FORUM AND STARTED READING ABOUT ALL THE RELATED HEALTH ISSUES, NAUSEA, DIZZINESS. FATIGUE, ETC. AND I REALIZE THAT I HAVE ALL THIS STILL, I HAVE LEARNED TO DEAL WITH IT ON A DAY TO DAY BASIS, "ITS JUST NOT AS BAD AS IT USED TO BE" AND THATS WHAT IT IS. THEN I PROMISED MY HUSBAND OF 20 YEARS THAT I WOULD GO GET A PHYSICAL. NOW I AM ON DRUGS FOR HIGH BLOOD PRESSURE, AND HIGH CHOLESTROL. I CHANGED MY DIET AGAIN AND HAVE LOST 24 LBS, WHICH MAKES ME FEEL EVEN BETTER, BUT STILL THE NAUSEA & DIZZINESS, & FATIGUE ARE STILL THERE. IHAVE PURCHASED SCOTTS gluten-free FOOD LIST TO HELP ME, BUT FIND WHEN INTRODUCING ANY NEW FOODS I TEND TO HAVE PROBLEMS. I ALSO MUST SAY THAT I DO NOT HAVE A "gluten-free" KITCHEN AFTER READING YOUR FORUM. I WOULD LIKE ANY BASIC SUGGESTIONS AT THIS POINT THAT MIGHT HELP ME. THANKS SUSAN

[KaitiUSA]

Have you also made sure that your products are gluten free? Things such as lipsticks, lotions, shampoos, basically anything that can get around your face should be checked. Also soaps and lotions you put on your hands because when you wash hands with soap and then prepare food..if the soap has gluten on it then the food has it now too.

Also since your kitchen is not gluten free you may be getting cross contaminated without realizing.

Do you have your own jelly jar, butter, toaster, and things like this?

Also, are your medications gluten free?

Have you been gluten free for that year and a half? If not then how long?

Is your husband careful with kissing you after just eating gluten?That can contaminate you.

Usually to measure compliance with the diet they will do a follow up biopsy to see if damage has healed(if you had a positive biopsy before) or they will do blood tests to see if antibodies have gone down. Have you considered getting another panel done to see if they went down or not?

Maybe you have another food sensitivity? Have you had testing for that done?

I had Candida and that caused me alot of nausea as well. Some of those symptoms can be similar to that of celiac. It is something worth investigating in my opinion.

Hope you feel better soon

[Guest GITRDONE]

Thanks Katie for your reply. I "thought" that I have been gluten-free, but can't say forsure now. I have been back to the doctors only once since my diagnosis. The first blood test I scored a 199. The test 6 months later was 21. I'm not due to go back for another 2 months, which he said I should have a negative number by then.

I just have not realized the sesitivity of a celiac. But I was so miserable for so many years, that the improvement in the quality of my life with the changes I have made have been a godsend.

Now you have me thinking. I am going to make a appointment tomorrow for another visit. But what should I ask the doctor to test for???

And yes, I am going to go through all lotions, soap etc. today and the fridge as well. I do 99% of the cooking so the kitchen is clean. But you say I shouldn't even touch anything with gluten, for instance, make toast????

Anyway thanks for all the help. Its hard to believe I can even feel better with a few more changes. I work 9+ hours a day and its taking its toll on me.

Thanks susan

[KaitiUSA]

But you say I shouldn't even touch anything with gluten, for instance, make toast????

No you can still do that...just make sure you wash your hands with gluten-free soap after that before dealing with your food. (Your toast should have a separate toaster though)

Since you have been gluten-free you can't really have accurate blood tests. If you are getting a test done to see if it went down then just have them do a celiac panel again to see if it is negative yet.

It is possible that you may be getting small amounts in products or cross contamination enough to make you feel bad.

Also, you can find makeup brands and shampoos, lotions, soaps that are gluten free on this site.

Anyway if you need more help just let me know and feel better soon

[flagbabyds]

Make sure that you have your own toaster because you can't clean the little things inside the toaseter.

Yes make sure that all of your produts are gluten-free, everything. I don't even touch gluten because I am scared I will get a reaction even if I wash my hands. SO make sure to scrub your hands right after you make toast or cook with gluten foods.

Make sure not to have any gluten flour in the house because it can stick and it stays in hte air and that is very east to inhale.

If you have any more questions just ask, I'm sure that someone here can answer it within like 1 hour at the longest.

[srdover]

You can also pick up gluten in other unexpected ways. 7 months ago, my employer was building a new office suite and when I visited the site to see how work was progressing, everything was fine until the walls started going up. After that, every time I went, I got a terrible headache, became nauseaus, my joint aches came back in full force: back, hands, elbows as well as multiple trips to the bathroom.

Everyone is different but for me the nausea is my clue that I have eaten something I shouldn't have. Usually before I finish eating the contaminated item, the nausea hits me. So I started searching to find out why. Turns out wheat starch is in drywall mud and the dust was in the air.

Think if there are ways that you are being exposed to gluten environmentally. Check and recheck the labels on the food you think is safe. Take the "forbidden" list from this website and go over the ingredients in your foods. I have gotten some items from the lists confused in the past. Watch out for the "natual flavors" and other untraceable ingredients. If you haven't already done so, check out the websites for the manufacturers of your favorite foods. See if they have info on their gluten content or lack thereof.

Now that summer is on the way, think about your grill. Don't cook your food in the same area that the meat with marinades containing soy sauce have been cooked.

You might want to think about cutting your diet back to exactly what you know is "safe" for a few weeks and then gradually add back in one food item at a time so you can narrow down what is causing you problems.

It sounds like we were probably diagnosed about the same time and to me it has been like putting the pieces of a puzzle together. Solving the mystery of why I have felt so bad one piece at a time. Good luck on your search. But from what I have reviewed on this message board over the last couple of days, there is a lot of knowledge and support available here when you have problems and questions.

Susan D.

[Guest GITRDONE]

Thanks you all have been very helpful. As for the toaster deal, I do not even buy the gluten-free breads. I eat nothing but fresh vegies & fruit and I grow/raise my own meat (beef & pork), I do buy my chicken & fish ( when I can't get to the lake to fish). I have totaly given up the subsitutes because of there cholestrel content. I am trying to lose weight and be heart smart. And anything gluten-free is very high in fast sugar content. Which when I went for my physical I tested High for diabetes. I am starting feel like this is a snowball effect. The harder you try the worse it gets..

I went from just about house-bound becase of diarreha to now the stomach cramps and constipation or mixture of both. Don't know if I'm coming or going.

At first the constipation was awesome, now I wonder which is worse.

I have just started contacting the spice manufactures that I use on a regular basis. Maybe that will shed some light on the way I feel. The same for the cosmetic end of it.

Anyway, you are all awesome in the knowlege you share with us. After reading much of your forum, I can only start to realize the depth of this diease, the different affects and the individual affects it has on all of us.

Thank you, Susan