General Suggestions Needed

[Clark Bent as Stupor-Man]

I have been entirely gluten-free for just about 2 months now. For the past month and a half, I have also been pretty much avoiding all soy, dairy, artificial flavors, corn, white potatoes, eggs, etc. with extremely few exceptions. I know I am hypoglycemic and eat a ridiculously high protein diet and have been for years.

I self-diagnosed myself a couple months ago though I was informed by a doctor to go on an elimination diet prior to learning about gluten and delayed food allergies. The first couple weeks I was definitely feeling a little better. For the past 4 or 5 weeks, I have been way too up and down, with more time spent reacting and recovering then on the up side. When I feel down, I feel awful, arguably worse than I had previous to this diet though I certainly had my fair share of really bad days beforehand. Sure enough, I start feeling better after a few days but only seem to enjoy a day or 2 of feeling good again before reacting to something else and spiraling down again. The hardest thing to deal with now is the severe brain fog I get when I react to something. I felt that this symptom had the most improvement the first couple weeks but fluctuates heavily now and has been bad the entire week with little reprieve since I reacted to something Monday night. I understand the fatigue may take a long time to go away, but I need to eliminate or significantly reduce the fluctuations of the brain fog and headaches.

I'm awaiting results from enterolab which I should receive within the next 2 weeks to confirm if I am on the right path with the gluten-free diet. I've also done numerous tests for 2 other doctors and am continuing to seek other solutions.

For the time being, I need some advice in case I am on the right path but not quite there yet. I have avoided getting new kitchen stuff (pots, pans, utensils, etc.) and do have a roommate who also uses the same things for cooking. I was planning on waiting for the lab results until switching all this stuff. I don't use the toaster anymore and cover my food in the microwave (at home as well as work). I also have eliminated a number of personal products that contained gluten but likely still use a couple that may have gluten.

Has anyone had similar experiences during their first few months gluten-free and did they find any success relieving this? Should I be seeing more improvement and not having severe reactions for days if my only known source of gluten may potentially come from cc and a couple products?

I've heard mixed opinions on delayed food allergy testing, both from people on this board and doctors I've talked to. Does anyone here feel they greatly benefited from having delayed food allergy testing done? I've had some difficulty pinpointing what foods I'm reacting negatively to and have been cautious at times of everything from chicken to apples. I realize the mere presence of a leaky gut could cause reactions to nearly any and all foods, but I am leaning towards getting delayed food allergy testing to aid with my diet.

Any suggestions are appreciated. Thanks.

- charlie

[jerseyangel]

Hi Charley--I noticed 2 things, that you felt markedly better right after cutting out gluten, and you tend to feel worse than before when accidently getting some. That is what I experienced, and I believe it's common for someone who's gluten intolerant. What may be happening is that you are still getting gluten in your cooking, and in some of your personal care products. It takes much less gluten to cause a reaction the longer you are gluten-free. For example, when I was gluten-free for about 2 months or so, I was having reactions that I could not figure out for the life of me. Up until then, I had taken a casual stance on my personal care products, too. I was using my regular hair gel, and one day, I caught myself biting my fingernail! That's when the lightbulb went on--I read the bottle, and it had wheat starch--I got rid of everything with wheat or oats on the label that day--and the mystery glutenings stopped. Ups and downs are normal while we're trying to figure this whole thing out. Until you commit to 100%, it will be difficult for you to make a lot of headway. On the subject of delayed food allergies, I'm currently working with an allergist. I have been allergy tested for all the foods--nothing showed up, although no big surprise there. He is going to help me with an elimination diet. From what I have learned asking others for their experiences and talking to this doctor, who has food intolerances himself, the blood tests have a lot of false positives, so you end up doing an elimination thing anyway. Hope some of this helps--best of luck with the tests

[dlp252]

An opinion regarding the allergy testing...the allergist I see now told me that positives are sometimes false positives, but that the negatives would be negative. When I had my testing done (with a different doctor--I'm considering having testing done again with this doctor since my other test was about 3 years ago), I only showed slight reactions to 4 foods...the rest were all negative. (Interestingly barley was among the 4 along with canteloupe, white grapes, yellow squash.)

In my opinion it would be a starting place if you suspect allergies...you could eliminate those foods that show positive and try adding them one at a time to see which ones were false. But with intolerances you'd probably still have to try the elimination thing.

[aikiducky]

I'd definitively look to eliminate all possible sources of cross contamination first, and only then start thinking about further allergy testing. Your symptoms sound exactly like your getting mildly glutened somehow all the time.

Pauliina

[lonewolf]

I had an ELISA panel done about 10 years ago and it was the best thing I ever did. It was accurate for me. Just avoiding gluten wouldn't have done the trick and I'm now pretty healthy. It would have taken too much time and effort to figure out all those foods on my own. I know there can be false positives, but I think it's worth doing.