Lost

[JH85]

So I've been gluten-free for a tad over 2 months, DF 1.5 months, casein free for 4 weeks and lest we forget Soy free for 4 weeks as well. I also have not eaten ANY spicy foods, been very strict on diet as a whole. Consisting of mainly fruits, veggies, and some meat, mainly chicken. Had a "good" spell for about a week, that was 2 weeks ago, now back to having severe D regardless of what I do or don't eat. I have not strayed from my diet restrictions at all, so I am just totally lost and confused as to what is going on. I have another doctors appt. today at 2:45. If he doesn't suggest it I'm going to request to see a GI..... This is just insane and so frustrating. I also have been told that I may have MS due to a large amount of symptoms I have. I know a lot of you on here have had similar diagnoses and solved it through a gluten-free diet. I certainly hope that is the story in my case. Not sure how much longer I can go with no solid diagnoses or even a 99% diagnoses. Anything would be helpful at this point. I feel more for my wife who has to deal with a severely pissed off husband. I haven't even talked to any of my friends in over a week I've just felt shut in due to not knowing what I can eat and the results of them. the word embarrassing comes to mind but it is so far past that at this point. Its not the diet but the result that comes right now from eating anything and sometimes nothing at all. Nothing seems to be helping and/or getting better. Oh, and the most embarrassing thing is that 4 weeks ago what helped me to realize my casein allergy is that I un-knowingly in jested some and was rewarded with severe D for about 12+ hours, thus producing a Hem. and since the ol' tummy has gone wild again its has not allowed for it to heal. Instead it has gotten worse, the main reason for the doc appt. Its gotten to the point where this morning I admitted to my wife that for the last 2 weeks, every morning I woke up and buried my head in my pillow and screamed because I did wake up and had to go through another day in hell. Well I shall stop ranting now, hope everyones day goes better than mine has so far.

[livelifelarge24]

I'm so sorry you are still so miserable. Please make sure the doctor does SOMETHING for you een if it's referring you to a GI. Keep us posted.

[kwylee]

Looks like you're eating well, is it all whole, unprocessed foods? That was the only way I could remain strictly gluten-free/DF/SF. If so, then it could easily be cross contamination especially if there are other gluten eaters in the household.

Here are some things I learned the hard way:

Can't share a toaster with someone eating gluten

Can't share a breadmaker that has been previously used to make gluten filled bread - even if washed thoroughly

Need my own new dedicated pots and pans

Watch for double dipping in condiments, and also stirring spoons if preparing a pot full of gluten vs non gluten food

Can't kiss someone who has ingested what I can't eat

You may not use makeup but there's always other lotions and lip balms and shampoos, etc.

Remember, even if it says GLUTEN FREE, it could still have dairy and/or soy in it - OR - it could be manufactured in a facility that processed those things, usually in the fine print

Here's something else - a biggie. Once I started to heal, I became reactive to new foods - e.g., I was a big fan of raw plums prior, but once my system began to normalize, I found a reaction to not only plums, but ANY raw stone fruit, like peaches and even raw almonds, oddly enough, which I have learned is considered in the stone fruit family. It may be just one food or a family of foods, like nightshade vegetables or other grains such as rice or corn, but if you keep a food diary with what you ate and when you ate it, then record symptoms, after a few weeks you'll have your answer on that.

I hope you're better soon. It's really great on this side of gluten.

[AVR1962]

This is just insane and so frustrating.

It does take awhile to figure out and I do understand your frustration. At one point I said I thought I would only be safe to eat baby food but of course I would never last a day.

I hate to add to your list but here's s few more thing sto be very aware of and experiment with- high fructose....crazy, but it is the 3rd most common allergy in foods....it affects me the same way as glutens. Pay close attendtion to your corn and rice consumptions, some people can not have one or the other or both. Soy is another one.

Are the foods you are eating actually gluten-free....oats as well as so many other products can be cross contaminated in processing, I only buy items labled gluten free.

If you are good on all of these then it would be time to check your medicaine cabinet for any products containing wheat (gluten), and if all good there and still having issues you may have to look at your cooking utinsils and baking dishes.

[JH85]

Thank you for your support, I am off to see one specialist tomorrow and one on sept. 14th... I'll keep you posted!

[cahill]

Hopefully you will be able to get some answers from your doc's. If not you may want to consider a (very) strict elimination diet.

Feel free to message me if you have any questions about doing an elimination diet .

[Takala]

Have you been tested for Lyme disease ? Internal parasites ?

You are either getting cross contaminated (no fun) or you are having another unresolved problem along with this. Or both.

re: MS like symptoms (ataxia, loss of balance, coordination) - I had neuro symptoms that mostly resolved thru a gluten free diet, have heard more than once that it "was probably MS" went thru the testing (more than once....) and guess what, it wasn't MS or anything else they tested for. Actually had the last Neurologist From Hell

[PainfulSpaghetti]

I also went through a battery of tests for MS, and when I stopped eating gluten the stroke like symptoms associated with what they thought was surely MS did indeed go away. Those were terrifying! I went to doctors, a Neuro, a Rheumatologist, and physical therapy.

I have been told I have severe fibromyalgia, tested repeatedly, and nothing I do, diet or otherwise make those symptoms go away, but the rest are better, and with my diligence all will continue to improve. And so will yours! Continue with any testing they require to make sure, but always remember you are not alone in this! There are LOTS of us, and we are willing to help.