Extended Gluten-withdrawal

[coriforia]

For the first 2 weeks of going on an elimination diet I felt GREAT. After 2 weeks I started to feeling horrible and have not been feeling well for about 3 months. I've seen numerous doctors and my labs show something is off, but they can't figure out what so they are just saying its some funky virus I'm fighting. My question is, is it possible this is gluten-withdrawal? Seems a pretty extreme reaction, especially since my lab numbers have changed. Main thing is my lymphocytes have been really high, my neutrophils were off too but I can't remember if they were too high or too low. Don't know if gluten withdrawal could cause that and for such a long period of time or if its just coincidence I caught something shortly after taking out gluten.

[GottaSki]

Healing can be slow and for me although some digestive symptoms improved I got worse and worse from about 5 weeks gluten-free until just recently seeing some improvement.

Do not dismiss those high blood tests, don't know what they mean, but make sure your vitamin/minerals have been checked. You may need extra supplements during the healing process.

I do hope you are feeling better soon -- I know first hand how horrible it is to backslide after thinking you finally found the solution to health problems when diagnosed Celiac.

[CGally81]

Healing can be slow and for me although some digestive symptoms improved I got worse and worse from about 5 weeks gluten-free until just recently seeing some improvement.

Do not dismiss those high blood tests, don't know what they mean, but make sure your vitamin/minerals have been checked. You may need extra supplements during the healing process.

I do hope you are feeling better soon -- I know first hand how horrible it is to backslide after thinking you finally found the solution to health problems when diagnosed Celiac.

Speaking from personal experience, I'm going through gluten withdrawal myself. I first went "mostly" gluten-free in early August. "Mostly" because I didn't know Fudgsicles contained gluten, and continued to eat them.

My first symptom was extreme, seemingly never-ending hunger. That's (sloooooowly) getting better. But like you, within 2 weeks of going "mostly" gluten-free, I developed some nasty symptoms. Muscle spasms galore. Itchiness, so bad on two days I was scratching myself a lot while lying in bed, and it took forever to get to sleep. Heartburn. The left side of my body seizing up for a split second (really scary, but only happened once). Chills in my legs and forehead. A feeling that my chest was very sensitive, that I could feel the buttons on my work shirt pressing into my chest, even though they're not tight at all.

Those symptoms started to get better... then flared up again, then got better, then worse, and so on, in waves. I have them only mildly from time to time now. After I cut Fudgsicles from my diet, the withdrawal symptoms returned in a big way (though not as terrible as at first) a week or so later, and my hunger shot up too. And I started developing these headaches (these showed up shortly before I cut Fudgsicles out, so that may have triggered the start of them).

It's been nearly 4 months, and the hunger might be gone in 1.5 or 2 months at the rate it's going, and my withdrawal symptoms are 80-90% gone. If I can offer any encouragement, it seems to get worse before it gets better, but it does get better.

Also, I'd been suffering overt symptoms since March before going gluten-free, so depending on when you got Celiac - silent symptoms or overt - you might have longer to go than I.

[CGally81]

Healing can be slow and for me although some digestive symptoms improved I got worse and worse from about 5 weeks gluten-free until just recently seeing some improvement.

Do not dismiss those high blood tests, don't know what they mean, but make sure your vitamin/minerals have been checked. You may need extra supplements during the healing process.

I do hope you are feeling better soon -- I know first hand how horrible it is to backslide after thinking you finally found the solution to health problems when diagnosed Celiac.

Oops, that reply was meant for coriforia.

But GottaSki, how long have you been going gluten-free? How long did your withdrawal symptoms go on for? This info might help coriforia, and me as well, since I'm still going through the withdrawal.

[TotalKnowledge]

Oops, that reply was meant for coriforia.

But GottaSki, how long have you been going gluten-free? How long did your withdrawal symptoms go on for? This info might help coriforia, and me as well, since I'm still going through the withdrawal.

Just hang in there. I had a lengthy withdrawal period and a relapse of some of the symptoms for a period of time. They have gradually gotten better.

Keep up the diet and hopefully they will get better with some time.

[GottaSki]

But GottaSki, how long have you been going gluten-free? How long did your withdrawal symptoms go on for? This info might help coriforia, and me as well, since I'm still going through the withdrawal.

I've been gluten-free for over eight months now. For me my digestive symptoms have continued to improve, but my achy/sore/painful joints, complete fatigue, fogginess and more got much worse. I was diagnosed with Fibromyalgia about a month ago. I remain hopeful that continued healing will repair my intestines, thus allowing me to obtain more nutrition to provide all my body's systems with what they need.

At first I was anxious that I had the wrong diagnosis, but my Celiac Antibodies have decrease and Vitamin/Mineral Levels (I supplement B, D, Calcium and Multi) have increase with both my 3 and 6 month celiac checks -- this comforted me when I was very down due to little improvement and worsening health.

I am doing much better since I've been treating the Fibro symptoms. And the most encouraging thing lately is I have been losing weight (about 20 pound thus far) consistently since going gluten-free. For many years I sited unexplained weight gain to doctors -- they would just smile and nod - like sure you eat well and get lots of exercise -- can you tell I really hated those dismissals?

Good Luck and hang in there if your gluten-free results are slow to come. I still have a long way to go!

[CGally81]

At first I was anxious that I had the wrong diagnosis, but my Celiac Antibodies have decrease and Vitamin/Mineral Levels (I supplement B, D, Calcium and Multi) have increase with both my 3 and 6 month celiac checks -- this comforted me when I was very down due to little improvement and worsening health.

Wait, you were going gluten-free, but had Celiac antibodies? When I got tested, my antibodies were said to be normal. Had you been Celiac for a VERY long time? I'd like to know why nothing was found for me. It's really upsetting to not be able to prove that I have Celiac, even though I've felt what eating gluten did for me and has been doing since around March.

[GottaSki]

Yes, I believe I was undiagnosed Celiac for many, many, many years -- yet my tTG IgA was only a weak positive at diagnosis.

Many, many people including my children have negative tTG IgA, yet improve while eating gluten-free. As for my kids, I have a pair, plus a single DQ2 which means they have at least one gene and therefore the possibility of Celiac.