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Worsening Symptoms Since gluten-free

shevyo

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shevyo Newbie
shevyo
Posted

Hi guys.

I really need your help. Has anybody found that your symptoms got alot worse when they went on the gluten-free diet? I am on the diet 4 months and i have found that nearly all my symptoms have drastically dis-improved. My gastroenteritis thankfully improved after a few weeks but i now have horrible tummy cramps that last for hours and my intestines are Constantly moving and shifting about inside me (this never happened to me before i went gluten-free). I also find that the worse my stomach gets it causes me to have anxiety attacks. Along with this i have also found that my neuro symptoms such as tingling,twitching, joint pain have increased through out my body (legs go dead- hard to walk,hands and feet are weak and cold,hip muscles - twitch,face- tingles). Even my right eye lid twitches!!! All of this started happening 3 weeks into the diet. I am ultra careful with my diet so i doubt i am eating gluten or cross contamination. I have heard that some people's symptoms get worse when they go gluten-free before they start to improve. Can anybody relate to my story? I am very worried..A quick reply from someone would be very appreciated

Thanking you in advance :)

shay

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redsidekick Apprentice
redsidekick
Posted

Yes, I can relate. I had really bad symptoms in Dec-Jan of this year. Was dx in February, and went gluten free around midway through Feb. It seemed that the symptoms that I had in in Dec-Jan (food passing through whole in loose bm's, bloating, pain in the intestines) quickly subsided but new ones (stomach growling, stomach & back pains, muscle twitching, difficulty sleeping probably due to anxiety) came about.

I can tell you six months later, I still get the stomach growling from time to time ( I think it may be a dairy issue), stomach pains less, and the twitching is a memory. I was very frustrated those first few months (Feb-April). Things started to noticeably turn around in May. Since June I think I had a few bad days each month, but nothing like the daily issues I had from Feb-April. I would say I am about 80% back to normal.

I know the frustration of reading of people feeling better quickly on the diet when that was not the experience I had, or it seems like you are having. I pray that things will get better for you.

dilettantesteph Collaborator
dilettantesteph
Posted

That also happened to me. It improved when I became more strict with my diet. I pretty well cut out all processed foods and grind my own grains, washing them first. I think that it is something that happens to highly gluten sensitive people.

OptimisticMom42 Apprentice
OptimisticMom42
Posted

Hello,

I also got worse for a while. Went from explosive D to horrible C and had pains in odd places like left wrist, left ankle, lower back. It was very frustrating. I am so thankful for this website. With each new pain or worry I was able to seach and find and answer like that my ankle and wrist pain was a sign that I had been glutened. All the pain being on one side was a mineral defiency.

Hang in there, it will get better,

RA

Guest Jacqadactle
Guest Jacqadactle
Posted

What you're experiencing is most likely withdrawal symptoms. It's kind of like how smokers get nervous, twitchy, moody, anxious when they quit. You're describing a lot of nervous system symptoms. It'll take a little while for it to get out of your system, but your body chemistry based itself on what you were eating your whole life, now it'll take a little time to adjust to the new way. Don't worry, it will get better.

Mrs. Smith Explorer
Mrs. Smith
Posted

Wow! You just recited my celiac story! I am 8mos. gluten-free and feeling much better! I went through all these symptoms. About month 6, it started to turn around. Vitamins were a key supporter, I have a friend who is a manager of a health food store supplement dept. She says the twitching can be a calcium deficiency. I started taking extra calcium and the twitching as gone. B12 has also been a true lifesaver for me. It has resolved most of my neurological symptoms! Epsom salt baths when I am achy are alot of relief, too. Slippery elm, digestive enzymes, and probiotics helped calm my gut and intestines. I did not have a normal BM since I was like 14yrs old, until 7 mos. into the diet and now they are normal everyday like clockwork! Hang in there and dont give up because eventually you will feel better than you have in a long time! PM me if you have any questions I have been where you are... :rolleyes: Its a journey.

T.H. Community Regular
T.H.
Posted

I'm only a couple weeks into my gluten-free diet, but it's definitely been much worse - tingling and aching issues with arms and neck, joint pain worse, etc... For me, it looks like my body has been responding to other foods, now that gluten is no longer an issue. I don't know which ones are sensitivities, and which are allergies, but I have had to cut my food choices to the bone. When I cut the foods down to homemade, one ingredient foods (carrots, homemade pinto beans with no spices, rinsed quinoa, etc...) and kept a food diary, I started noticing that my symptoms went along with some of the foods. Ear pain - only in my left ear. weird, eh? - happend 5 minutes after I ate lemons. Joints aching and feeling spacy headed happened within 15 minutes of eating anything with sugar cane! - which is an ingredient in lots and lots of the gluten-free processed foods, so that kind of cut out most foods that were made to be 'gluten-free.'

When I stopped the foods, the pain started to go away. I was kind of wondering if I was just imagining it, but then I ate something that made my throat swell up and got me stuck in the ER, so that pretty much determined that yes, I am having reactions to foods!

I figure I mention it because it's a simple thing to check, if any of your problems are related this - just record every ingredient you eat, try to eat very simple things for few days (literally. it was obvious within days), and track how you feel. If there's any other food issues coming into play, it would be easy to see.

Good luck! I hope that it is more the gluten withdrawal that many seem to have, so that it will pass and gluten will be the only food that you have to avoid! :)

T.H.

Hi guys.

I really need your help. Has anybody found that your symptoms got alot worse when they went on the gluten-free diet? I am on the diet 4 months and i have found that nearly all my symptoms have drastically dis-improved. My gastroenteritis thankfully improved after a few weeks but i now have horrible tummy cramps that last for hours and my intestines are Constantly moving and shifting about inside me (this never happened to me before i went gluten-free). I also find that the worse my stomach gets it causes me to have anxiety attacks. Along with this i have also found that my neuro symptoms such as tingling,twitching, joint pain have increased through out my body (legs go dead- hard to walk,hands and feet are weak and cold,hip muscles - twitch,face- tingles). Even my right eye lid twitches!!! All of this started happening 3 weeks into the diet. I am ultra careful with my diet so i doubt i am eating gluten or cross contamination. I have heard that some people's symptoms get worse when they go gluten-free before they start to improve. Can anybody relate to my story? I am very worried..A quick reply from someone would be very appreciated

Thanking you in advance :)

shay

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ang1e0251 Contributor
ang1e0251
Posted

The advice about vitamins is spot on. Sublingual B12 ( methyl type ) was a huge help to me. But don't forget the magnesium. The calcium has to have mag to work properly. When the epsom salts baths relieve your muscles, that's because those are magnesium salts and another thing mag does is relax muscles and the walls of your veins and arteries. That's how I lowered my blood pressure. Dr. Carolyn Dean recommends 600 mg daily for an average adult. For more great info on magnesium and how it can help with all kinds of health problems, read "The Miracle Magnesium" by Dr. Dean.

Sue123 Newbie
Sue123
Posted

I have the same problem. At first everything was great, then other symptoms began to appear. This is how it was explained to me. As the cilia begin to grown back in your intestines, you become more sensitive to the gluten. Makes sense to me, I guess, but it's getting harder to eat.

dilettantesteph Collaborator
dilettantesteph
Posted
As the cilia begin to grown back in your intestines, you become more sensitive to the gluten. Makes sense to me, I guess, but it's getting harder to eat.

Thanks for that explanation. It makes sense to me too.

GottaSki Mentor
GottaSki
Posted

I improved from week 2-5, but from then on I have had much more severe joint/back pain, fatigue, sleep problems, spacey and much more. Just over 5 months now and remain hopeful and at time anxious for improvement.

I was very sick and tired of being sick and tired before dx and very happy when I finally had an answer...it's been tough being sicker during healing, but at least I've found comfort and many answers in this forum.

My gastro issues have improved, so gluten-free is working...just frustrated with everything else.

Read a thread today that reminded me...my nails have improved a great deal which is another positive.

Hanging in there...hope you are too!

jlr Apprentice
jlr
Posted
Hi guys.

I really need your help. Has anybody found that your symptoms got alot worse when they went on the gluten-free diet? I am on the diet 4 months and i have found that nearly all my symptoms have drastically dis-improved. My gastroenteritis thankfully improved after a few weeks but i now have horrible tummy cramps that last for hours and my intestines are Constantly moving and shifting about inside me (this never happened to me before i went gluten-free). I also find that the worse my stomach gets it causes me to have anxiety attacks. Along with this i have also found that my neuro symptoms such as tingling,twitching, joint pain have increased through out my body (legs go dead- hard to walk,hands and feet are weak and cold,hip muscles - twitch,face- tingles). Even my right eye lid twitches!!! All of this started happening 3 weeks into the diet. I am ultra careful with my diet so i doubt i am eating gluten or cross contamination. I have heard that some people's symptoms get worse when they go gluten-free before they start to improve. Can anybody relate to my story? I am very worried..A quick reply from someone would be very appreciated

Thanking you in advance :)

shay

I have found one Peppermint Oil pill (Pepogest) and then a cup of Peppermint Tea with each meal - it really soothes the stomach!

Good Luck!

George206 Newbie
George206
Posted

What a relief to read that I am not the only one who is getting both better and worse after going gluten free.

I was diagnosed peripheral neuropathy in early June 09 after going to my family doctor for what I thought was carpal tunnel syndrome. He tested my B12 level and I was way low. He then tested for Intrinsic Factor (IF) antibodies and I was IF+ (although in my ind this is questionable). After that he basically recommended B12 shots for life and sent me on my way. He never even considered Celiac/gluten intolerance to a contributing factor.

To make a long story short, I did some further investigation on sites like this, found a good ND, a was diagnosed with a pretty bad gluten intolerance. After being off gluten for a week I felt much better, then after about a month I felt terrible. Everything hurt and my anxiety went through the roof. I'm still dealing with the anxiety but just this morning I feel like I'm starting to get better again. It is truly awful to feel like you are getting better and then to get slammed with symptoms that are worse than those that sent you to the doctor in the first place.

Thank you all for your posts. They made me feel like I'm not alone. Wow, this recovery thing is way harder than I thought it would be!

  • 6 months later...
Jane Chase Newbie
Jane Chase
Posted

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