One Month Gluten Free.. Decided To Take A Week Vacation Eating Gluten..

[asickdaddy]

My doctor will not diagnose me. He is not being mean about it, he just wants more testing. I went one month gluten free and within days felt better. At my fourth week I started feeling like total garbage. My stomach pain returned although it seemed somewhat more tame, and I started getting headaches. I was frustrated, so I said lets test by eating it. Lets see what happens.

For me it is not instant. Maybe that is the way gluten works. But the first day I ate it, it was not that bad. I may have even felt better.

The second day I ate it, it was not that bad. I may have even felt better.

The third day I ate it, I went to the park with my kids and felt like passing out and puking. I was feeling horrible. It soon went away, I may have even felt better afterwards.

The fourth day it seems ok, later in the evening I feel like I am going through withdrawal of some kind. Feeling kind of dizzy, but yet not dizzy. Feeling like I am trembling but yet I am not. It is strange I just feel shaky and dizzy but there are no outward signs of it. Just a feeling.

The fifth day, not so bad.

The sixth day I notice a return of my acid reflux. I am having the return of my cough due to acid. My left nostril becomes dry congested. The congestion is painful, dry and almost like I have sores in my nose.

The seventh day I notice that the ketarosis pilaris, the red follicle bumps seem to have whitish bumps. More acid reflux. Drinking a little bit of baking soda to combat acid. drinking chamomile.

The eigth day, I have acid reflux, cough, my nose is slightly sore and dry congested. My bumps on my arms feel more bumpy but look about the same. My stomach pain has returned with a vengence. When I drink water I feel a soothing feeling as it goes down my esophagus and into my stomach, this lasts for seconds.

My bowel habits have greatly slowed. On the gluten free diet I started to go to the bathroom daily and it did not look pretty for a few weeks. Towards the end of my 4 week trial, it looked pretty healthy and was regular. Now on gluten I feel no urge to go. I have gone maybe once this entire week.

My anxiety has increased greatly and I am not sleeping as well.

I needed to have the contrast to have a list to give to the doctor. I wanted to do this.

My only concern, I think I feel better on the gluten and dairy free diet. I think it is better for me in the long run. I say I think because I got some painful episodes on the gluten free. It may have been withdrawal. I noticed that during the gluten free month, I felt more depressed. I eventually started getting headaches that would not go away with conventional methods. I noticed that I seemed to bit my tongue during sleep which I never noticed before. It was not seizure as I woke up as I bit my tongue. I guess my problem is getting through the rough patches is very hard and without a sympathetic or shall I say an understanding or involved doctor, there is no guidance, reassurance, aid. I am very sad at the moment, not in the crying sense just sad as I feel trapped in a body that is not properly functioning. I lost my healthcare and have to apply for temporary disability just so I can continue testing or have any kind of care.

Lastly eating gluten free is so expensive. I had no cravings for gluten type foods but I was spending a lot to get the right kind of stuff to eat. My family also are quite healthy and none want to do the gluten free diet. Which is not a big deal, except I have to practically eat seperately, shop seperately, and obviously no dining out.

I am sorry for the rant, I know everyone is probably in or been in this boat at one point. Hugs all around.

[sreese68]

The fourth day it seems ok, later in the evening I feel like I am going through withdrawal of some kind. Feeling kind of dizzy, but yet not dizzy. Feeling like I am trembling but yet I am not. It is strange I just feel shaky and dizzy but there are no outward signs of it. Just a feeling.

Just FYI: my symptoms are mostly neurological (neuropathy). When I did a gluten challenge, I felt this way the entire time and for a few days afterward. It's my main symptom apparently. (Felt it when glutened a bit ago).

And thanks for posting all of the above. My daughter is currently on day 4 of a gluten challenge. No obvious signs of problems yet, but it's good to know that things can fluctuate and creep up on you. Will show her your post.

[GlutenFreeManna]

It sounds to me like you had some cross contamiantion you could not pinpoint in your 4th week that had you feeling bad. I only start to crave gluten foods when I get cross contaminated somehow. That your family will not support your gluten-free diet is a big problem. I'm sorry you are having to go through that because it would be so much easier if they would at least agree to make some meals gluten-free. I have to wonder what exactly you mean when you say they want to "eat healthy" instead of eating gluten-free with you. gluten-free food should be healthy! Vegetables and lean meat, beans, rice, etc can all be very healthy and make good meals that are naturally gluten-free. Yes, there is lots of junk food that is also gluten-free but ideally your diet should be including more healthy stuff and less junk. Have they read up at all on the gluten-free diet or celaic disease? Does your wife understand that your kids are at risk of having it too? Would a positive test result convince her to make changes to the household for your health? These are things you need to consider.

[Gemini]

Lastly eating gluten free is so expensive. I had no cravings for gluten type foods but I was spending a lot to get the right kind of stuff to eat. My family also are quite healthy and none want to do the gluten free diet. Which is not a big deal, except I have to practically eat seperately, shop seperately, and obviously no dining out.

I am sorry for the rant, I know everyone is probably in or been in this boat at one point. Hugs all around.

I am the Celiac in my family and my husband is not. It is not true that you have to do everything separately! The one concession my husband made was to switch to gluten-free bread because I could not stand the smell of wheat bread toasting in his toaster...it makes me gak. He sometimes forgot about the crumbs too so I banished gluten bread only from the household because of the crumb factor. Amazingly enough, he decided to try and make gluten-free bread from scratch and now turns out the most delicious bread ever. I am now eating more bread, which is OK because I'm one of those skinny Celiacs.

Your family will have to learn how not to CC you and they should be very willing to do that, at the very least. They don't have to go entirely gluten-free but they should be willing to co-operate with your desire to be healthy. If the kids are too young, your spouse will have to pick up the slack on that. It is what it is and the sooner you accept what you have to do, then you can be on the path to good health and happy times. You are allowed to rant and gripe occasionally, though!

Check this out and you will learn you can eat in restaurants successfully! Open Original Shared Link

[asickdaddy]

Thanks for all the replies. I am starting back on the diet.

My family is supportive I just think that because I challenge the gluten free diet and I have yet to get a diagnosis that it sort of becomes this mild joke. Their intentions are good, but I think everyday they wonder, is he gluten free or not?

My doctor had me testing and eating gluten and honestly my family does not quite understand it. Especially 2 and 3 year olds. My wife does her best but she is confused by it all, and I don't blame her. Its been a back and forth ride of eat this now, and now don't eat this.

So anyway, I am in agony, loads of pain in my stomach and a burning esophagus. I need to find an answer and I just decided to just try and do 2 years of the diet at minimum. So that is my current goal.

[txplowgirl]

Lastly eating gluten free is so expensive. I had no cravings for gluten type foods but I was spending a lot to get the right kind of stuff to eat. My family also are quite healthy and none want to do the gluten free diet. Which is not a big deal, except I have to practically eat seperately, shop seperately, and obviously no dining out.

I am sorry for the rant, I know everyone is probably in or been in this boat at one point. Hugs all around.

Hi there sick daddy, I'm sorry you feel so bad. But it takes time to recover and you will. But, you do not have to eat the gluten free precessed food. Basically it's crap, higher in sugars and carbs. Try natural gluten free foods like plain meats, fish, chicken, vegetables, rice and some fruits. Stick with those for awhile.

[jennennyc]

My doctor will not diagnose me.

The fourth day it seems ok, later in the evening I feel like I am going through withdrawal of some kind. Feeling kind of dizzy, but yet not dizzy. Feeling like I am trembling but yet I am not. It is strange I just feel shaky and dizzy but there are no outward signs of it. Just a feeling.

The sixth day I notice a return of my acid reflux. I am having the return of my cough due to acid. My left nostril becomes dry congested. The congestion is painful, dry and almost like I have sores in my nose.

I eventually started getting headaches that would not go away with conventional methods. I noticed that I seemed to bit my tongue during sleep which I never noticed before. It was not seizure as I woke up as I bit my tongue. I guess my problem is getting through the rough patches is very hard and without a sympathetic or shall I say an understanding or involved doctor, there is no guidance, reassurance, aid. I am very sad at the moment, not in the crying sense just sad as I feel trapped in a body that is not properly functioning.

Lastly eating gluten free is so expensive. I had no cravings for gluten type foods but I was spending a lot to get the right kind of stuff to eat. My family also are quite healthy and none want to do the gluten free diet. Which is not a big deal, except I have to practically eat seperately, shop seperately, and obviously no dining out.

Ugh... this all sounds painfully familiar! I just started trying a gluten-free diet a few days ago to try and figure out if that's what's causing my problems, but I definitely recognized a lot of the symptoms and issues you described... too bad my doctor thinks the only symptoms of celiac are diarrhea and stomach pain! Anyway, hang in there, and good luck!

[ErinP]

I agree with plowgirl.

Stay away from fake food, no matter if it's "gluten free" or not. Yes, it's a hassle having to cook, but it doesn't have to be expensive. Well, unless you've been living on macaroni and cheese and ramen noodles that is. In which case, yes, it's more expensive.

The vast majority of food on this planet is naturally gluten free. Fruits, veggies, meat, fish, etc.

So far as a diagnosis, do you NEED one? Personally, I don't. I know what I feel like when I'm eating grains, I know what I feel like when I'm not. For me, it's a no-brainer.

I haven't bothered to try to chase down a for-sure celiac diagnosis because it's completely irrelevant. I don't need a doc telling me I have to avoid gluten when I already know it...

BTW, I'm the same way with the time frame. Day one doesn't bother me. Day two, not really... But by day three, holy cow am I miserable!