Is Recovery Like A Rollercoaster?

[Wendyp]

Hi,

I've been gluten-free for six weeks. My symptoms are mainly muscle weakness and sleepiness. Last week I felt pretty good...even really good!! Now I'm sliding back again. today I just want to go back to bed again (only been up an hour), after a good 8 hours sleep!

I've gone back through my diet and can't find a culprit. The last time I felt like this I could trace it to a glutening 12 hours before. The only thing that is different is I ate some homemade gluten-free bread with a sweet rice flour produced in California (not specifically labeled gluten-free, but does say good for gluten-free diets). And I am at the beginning of my monthly hormone cycle. Are celiac symptoms somehow tied into the estrogen/progesterone cycle? The days I felt good were the 5 days before my period.

Thanks,

Wendy in Fort worth

[happygirl]

Short answer: Yes, like a roller coaster

Here are some reasons why you might not be feeling well.

You've only been gluten free for 6 weeks. While it seems like an eternity, your body is probably still healing. Regardless of if you are 100% gluten free, your body may still be having trouble digesting foods, and your vitamins, minerals, etc might not be back up to par. It can take a few months or longer to feel back to normal. I would eat "safe" foods and still get sick bc my body was healing. Plus, if you haven't been 100% gluten free, your body is not only healing from the pre-Celiac, but from any glutenings.

You could have been glutened and not known it (i.e., the bread might be gluten-free but was contaminated?)

Some people have other intolerances....some are only "temporarily intolerant" until the Celiac damage has healed (for many, lactose is a temporary problem).

Good luck, hope you feel better!

[danikali]

I don't have an answer for you, but that's an interesting theory. I've also noticed that I feel my best the week before I get my period. (or about 2 days before I am going to get it, I start getting symptoms)......but then again, that's also when I start craving bad foods, and I always try new 'gluten free' things or mainstream gluten free products that are processed in places with wheat (sometimes on the same lines!)....so that's my fault because I am not being as careful about CC because my cravings literally overtake my common sense. (hehe, well, you know, I can't blame it all on that). So that could be my problem too.

[zip2play]

Last week was a bad week for me. I couldn't tell that I actually had gluten, but I did eat out one day and CC could have happened. BUT this week is my period! If there is a correlation, that might be why my problems were so severe. I mean, stomach issues, D and mouth sores! LOVELY! I will have to let you know if it is related to my period next month. I will watch more closely!

Monica

[CMCM]

Enterolab says they can detect antibodies in the stool up to a year after you stop eating gluten. SO...if your body can still produce these antibodies, perhaps they account for the recurring symptoms here and there even though you have cut gluten from your diet. Just a thought...I don't know if this is actually true, but it makes sense.

[Neko]

Hello;

I have a question and then I have a comment for Wendyp:

A. QUESTION:

I'm really embarassed by this question but I have to ask it since I am recently going through my own rollercoaster phase.

Recently I have been getting the occasional spell of gas - sometimes it builds up so much in my stomach that it becomes painful. However, once the gas is "relieved" - which might take a few hours or a few days - I am completely fine. Is this normal or am I retarded?

B. COMMENT FOR WENDYP:

For about ten years I have been trying to live gluten and diary free (allergic to the first and highly intolerant to the second). Most of the time I have been successful...and with the newer labellling laws that have been implemented in 2006 - it is SOOO much easier!

Before my diagnosis I was severely ill for many many months (anemia, bloating, constipation, weakness, fatigue, amenorrhea, etc! etc!)! After my diagnosis - my recovery was spotted at best because 10 years ago no one really had a clue as to how I was to stay free of both. I slowly got better, but I found that I kept relapsing. With each new relapse - I discovered another hidden gluten/dairy culprit. For example (don't laugh please) - I'm a student and on a limited budget so I decided to buy a shampoo that was really cheap. The first few days were without incident...but by the fifth day my entire head had broken out in hives and my stomach was hurting. I couldn't figure out what I could've possibly eaten that was making me so ill....but then I discovered that the cheap shampoo contained wheat protein. Once I got rid of the shampoo the hives cleared and my stomach felt better.

I think that what most of you are saying is true - it is not always possible to control for CC and on top of that - IT IS AMAZING where you will find gluten! I can't even lick stamps!!!

Even though it's been almost a decade, things are not perfect. Some days/months are better than others. The only thing that I can say is that you are lucky that you were diagnosed now. There are so many more gluten and dairy free options/restaurants now than there were when I was first diagnosed. I remember literally crying my eyes out the night of my diagnosis b/c I thought that I wold never be able to enjoy food again (and I LOVE to EAT!). But, with each fall - we have to pick ourselve up and try and figure out how not to fall that way again.

Even though you will have your rollercoaster moments (and you will probably have them for the rest of your life - unless we find a cure or all restaurants and food stores become completely gluten/dairy free)...over time the downs will not be as severe.

Good luck with your recovery - I wish you many many more ups than downs.

Sincerely and sympathetically,

Neko

[jaten]

For me it's a rollercoast. I feel the worst of course after an accidental glutening. But sometimes just feel bad anyway. 9 wks gluten-free.