Anyone Feel Better After First Going Gluten-free, Then Worse Again?

[GFinMN]

Hi there,

I was dx w/ celiac 2 mos. ago and felt great after going gluten-free. But then about 6 weeks into the gluten-free diet and feeling great, I got worse and am having new symptoms. I feel dizzy and foggy immediately after eating anything and it continues for several hours. My blood sugars were checked multiple times pre-diagnosis and were always very normal. I am also bloated and don't have much of an appetite, which really sucks because the first six weeks going gluten free were awesome as my appetite was back to normal. I am definitely not getting any cross contamation. I eat at home every night and have just been doing the basics of meat, potato, veggie until the stomach heals.

Just wondering if anyone else had new symptoms develop after being diagnosed and feeling really great for a while. Also, any other causes for this dizziness/foggy feeling and lack of an appetite? I have read about developing new food allergies, but I don't know that those would make you dizzy and spaced out - they would be more gastro symptoms, correct?

Thank you!

[aikiducky]

Both gluten and dairy make me feel dizzy and spaced out so don't rule it out.

After you've been on the diet for a while, you get more sensitive because your body doesn't have to deal with a constant battering any more. So it might be that you're reacting to a minute amount in a medicine, or in your make up or shampoo etc. OR you are starting to notice a reaction to another food that was previously suppressed by the gluten reaction. OR you had a crumb somewhere two weeks ago and you're just not quite over it yet. Don't discount that either, it can take that long.

If you start to suspect another food, I'd first start with a few days without dairy and see if that helps.

Finally, the healing process comes with it's ups and downs, sometimes it just takes time.

Pauliina

[GFinMN]

thank you so much for the reply! that's good to know about dairy. i have been off lactose but have been drinking Lactaid milk.

Both gluten and dairy make me feel dizzy and spaced out so don't rule it out.

After you've been on the diet for a while, you get more sensitive because your body doesn't have to deal with a constant battering any more. So it might be that you're reacting to a minute amount in a medicine, or in your make up or shampoo etc. OR you are starting to notice a reaction to another food that was previously suppressed by the gluten reaction. OR you had a crumb somewhere two weeks ago and you're just not quite over it yet. Don't discount that either, it can take that long.

If you start to suspect another food, I'd first start with a few days without dairy and see if that helps.

Finally, the healing process comes with it's ups and downs, sometimes it just takes time.

Pauliina

[kabowman]

Yes I did. That is when I discovered my many other food intolerances. Once I removed gluten, I realized that other things were bothering me too.

However, I do not have a celiac disease dx, I tried the gluten free diet and, amazingly got better.

I think yeast was a hard one to figure out - it makes me sleepy and foggy. Another one I have that is not listed below is the calcium suppliment that is added to non-dairy milks and OJs. Not sure what it is derived from but I can't stomach it, litterally

I also have given up using most styrofoam because for some reason, most bother me, not all but enough to limit what I use to only what I get from my butcher for my whole chicken.

[Mango04]

I've heard that it's common to feel suddnely worse about 6 weeks in, as that's when your body might start to really detox. Cutting out dairy is a good suggestion though.

[chick2ba]

I was dx w/ celiac 2 mos. ago and felt great after going gluten-free. But then about 6 weeks into the gluten-free diet and feeling great, I got worse and am having new symptoms.

YES! I followed the same pattern.. good for 2-3 months, then all the old symptoms + some came creeping back into my life. It was so depressing and frustrating.

I found taking out dairy (lactose) made a HUGE difference. I suggest starting a very detailed food diary to help pinpoint contamination sources. I used a number system to quantify my health (1 was very bad and 10 was awesome). I was so indignant that gluten was finding its way into my body.. I was so super super careful with everything, that I figured it was impossible! Keeping the diary made me realize a product or two (Pamela's cookies, etc) were setting me off every single time. Be aware that you might be reacting to things you NEVER DREAMED POSSIBLE!! Also, as your body becomes even more sensitive, you will begin to react to new, different products. The diary is/was very helpful and helped me "connect the dots".

I hope you feel better soon. I'm glad to report my health has improved tremendously since I removed the 2-3 contaminated products from my diet. It's a long road (over a year into the diet), but so worth it. Please realize it will gradually get better once you weed out contaminates and other triggers.

[mftnchn]

Hi, I am about 1 month into the gluten-free diet, both gluten and milk free. I have found it to be a very up and down road, with some improvement for awhile with constipation, but mostly worse.

I have gleaned from this board that sometimes that is the case, that we become more sensitive, and that we just have to hang in there for the long haul.

Today I figured out that all my hair care products have gluten (I have been using Nioxin since significant hair loss a year and a half ago and love it). Rats!!!! I have no access to anything to replace it, and figure what I find here locally might be worse. Sooo, I am doing my hair over the sink, wearing gloves, with my face in a towel, and trying to be very careful. Seems the fogginess and fatigue is already better today.

We are all so careful, and it is frustrating to find out we are still getting gluten.

[spunky]

I was already dairy free when I went gluten free. But going gluten free even apart from any possible dairy issues was a LOT of ups and downs for me, for many months. By one full year, things were pretty much settled down, although still improving pretty steadily. That's when it started getting all kind of messed up again, and I had an idea maybe it was soy. I dropped all the soy, things turned around again in 2 1/2 weeks.

Now it's been 15 months gluten free, two or three months soy free, never having done dairy for the past couple of decades anyway...feeling amazingly well. Still sometimes have some unwelcome gas, rumbling, or whatnot, but nothing anywhere near what it used to be, and more really good days than anything else...it's still gradually improving.

Those first 6 months gluten free, though, there were some BAD times, lots of ups and downs. It was tough. You gotta hang on and wait it out. If things aren't at least better during the second half of the first year, it might be time to really wonder about other intolerances popping up. Just my personal opinion, based on my own experience during this past almost year and a half.