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Bad Side Effects On Gluten Free Diet.


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#1 Leeis2k

 
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Posted 07 July 2010 - 12:39 PM

Everytime i go on a Gluten free diet i feel drained and my back kills me, mostly my spine. It feels like maybe im missing something that i get during my normal diet that im not getting in my gluten free diet. Like carbs or something that i need, does anyone have any idea?
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#2 ravenwoodglass

 
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Posted 07 July 2010 - 01:05 PM

What are you eating when you go off gluten? It is best to stick with meats, veggies, fruits, beans, rice, potatoes etc at first. Are you consuming the specialty gluten free foods? Many of those have soy, which can be an issue for some of us and they often have things like bean flour and sorghum that we are not used to eating and may be intolerant to. It is best to go with whole naturally gluten free foods at first.
You also may be experiencing withdrawl. It can take different forms. Many get moodier but the possiblity of some type of increase in pain could, I think, be possible.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#3 GlutenFreeManna

 
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Posted 07 July 2010 - 02:04 PM

You will feel drained and more tired for the first week or two. You body may be going through withdrawal symptoms and it takes a lot of energy to heal. Many people report they sleep more when they first go gluten free. If you try it for several months and you are still feeling run down then maybe you are missing some vitamins you need. Have your doctor check thyroid as well as iron levels, and Vitamin levels.
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A simple meal with love is better than a feast where there is hatred. Proverbs 15:17 (CEV)

#4 Kim27

 
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Posted 07 July 2010 - 04:30 PM

Everytime?? There should just be OnE time ! You would feel much better if you Hung in there, stayed gluten-free & got over the hump. Quit going back to gluten or you'll never feel the good effects of it. I felt kinda crappy about 2 weeks after gluten-free, but it DOES go away. Afterall, completely changing your diet is a big change ! Hang in there & it'll be worth it...
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Thanks!!!


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Newly diagnosed Celiac trying to learn the ropes

Very Positive tTG 3/10
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#5 Leeis2k

 
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Posted 08 July 2010 - 01:06 AM

Thanks for the reply's everyone. Its really funny how this seems to work for me. Yes i did go off soy and im eating nothing but gluten free foods. But what i also tried was getting some foods with a little bit of gluten in it like tomato soup for 3 days or so then switched back to gluten free and felt GREAT. But im sure that can't be healthy.

What it seems like to me there's a vitamin in wheat that im lacking in the gluten free diet. i just have no idea what it could be.
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#6 GlutenFreeManna

 
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Posted 08 July 2010 - 04:14 AM

Thanks for the reply's everyone. Its really funny how this seems to work for me. Yes i did go off soy and im eating nothing but gluten free foods. But what i also tried was getting some foods with a little bit of gluten in it like tomato soup for 3 days or so then switched back to gluten free and felt GREAT. But im sure that can't be healthy.

What it seems like to me there's a vitamin in wheat that im lacking in the gluten free diet. i just have no idea what it could be.


It sounds like you have yet to go completely gluten free. You can't do it for just a few days and feel better. You can't "cheat" by having things like tomato soup with just a little bit of gluten and feel better. A little bit of gluten is like a little bit of poison if you have celiac or gluten intolerance. It is also like a drug for some and you body is going to be going through a withdrawal process. Would you give an drug addict a little bit of cocaine? Also what "gluten free foods" are you eating when you go gluten free? Are you eating a lot of processed gluten-free foods or are you eating whole foods that are naturally gluten free. You should do a whole foods diet to start with because you may be intolerant to some ingredients used in gluten free packaged foods. There is also a bigger risk of cc the more packaged foods you consume.
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A simple meal with love is better than a feast where there is hatred. Proverbs 15:17 (CEV)

#7 Tina B

 
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Posted 08 July 2010 - 06:18 AM

Everytime i go on a Gluten free diet i feel drained and my back kills me, mostly my spine. It feels like maybe im missing something that i get during my normal diet that im not getting in my gluten free diet. Like carbs or something that i need, does anyone have any idea?


The others are correct, you can't only do it for a few days and expect results. Also, Rice, Corn and potatoes are carbs.
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Gluten free since 1990.
Diagnosed by duodenal biopsy.

You don't stop skiing because you get old. You get old because you stop skiing :-)

#8 Leeis2k

 
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Posted 08 July 2010 - 06:31 AM

I never said i wasn't on the diet for a long time before i tried something with Gluten. I was Gluten free for 4 months and i was just getting worse then ate the soup and felt better for a short time.

Its almost like when i go gluten free i heal, then my body can absorb whatever it is i need from wheat/gluten.
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#9 ravenwoodglass

 
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Posted 08 July 2010 - 09:18 AM

I never said i wasn't on the diet for a long time before i tried something with Gluten. I was Gluten free for 4 months and i was just getting worse then ate the soup and felt better for a short time.

Its almost like when i go gluten free i heal, then my body can absorb whatever it is i need from wheat/gluten.


There is nothing, absolutely nothing that you would be getting from wheat or gluten that can not be found in other foods like rice, potatoes etc. I am wondering if your having CC issues from someplace like your cosmetics, shampoos, do you have a pet and feed it gluten food (some of us need to make our pet gluten-free). do you have a significant other that you kiss who eats gluten, if so they need to brush their teeth before you get intimate.
Has your doctor run vitamin and mineral panels on you? If not that should be done to make sure you are not anemic or don't have another deficiency going on.
If you were gluten free for 4 months and then started feeling worse you need to look at what changed. Sometimes we can get glutened in the most surprising places. Things like playdoh, if you have kids, drywall compound if your remodeling, arts and crafts supplies etc can all be sources of CC.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#10 Leeis2k

 
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Posted 08 July 2010 - 09:43 AM

There is nothing, absolutely nothing that you would be getting from wheat or gluten that can not be found in other foods like rice, potatoes etc. I am wondering if your having CC issues from someplace like your cosmetics, shampoos, do you have a pet and feed it gluten food (some of us need to make our pet gluten-free). do you have a significant other that you kiss who eats gluten, if so they need to brush their teeth before you get intimate.
Has your doctor run vitamin and mineral panels on you? If not that should be done to make sure you are not anemic or don't have another deficiency going on.
If you were gluten free for 4 months and then started feeling worse you need to look at what changed. Sometimes we can get glutened in the most surprising places. Things like playdoh, if you have kids, drywall compound if your remodeling, arts and crafts supplies etc can all be sources of CC.


No, I'm 100% sure man. The bad feeling i have on the gluten-free diet feels much different then when I'm on Gluten. When I'm on gluten-free diet its far less brain fog, Less chest pressure and less anxiety but more of a drained vitamin lacking feeling(and yes I'm on a few vitamins 100% gluten free) and back pain.

On Gluten i have all those things full blown other then the back pain and the drained feeling. Yet when i did the gluten-free then ate something small with gluten changed back i better then i ever felt in my life.

I also am reading Gluten has a special type of protein and that may be the one thing im lacking.
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#11 sb2178

 
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Posted 08 July 2010 - 10:51 AM

So, are you celiac? Gluten intolerant? Have you had any follow-up bloodwork since your diagnosis? If your bloodwork is still abnormal, you probably aren't actually gluten-free and need to eliminate other exposures. You can see a dietician or nutritionist to determine if your diet does lack something (grains have things like B vitamins, fiber, etc) that you formerly got from wheat but are not getting from your substitute foods.

There is a rare, rare thing called refractory celiac sprue, but it's far more likely that you just have some source of exposure and/or other health issues like hypothyroid or nutrient deficiencies. Magnesium, vitamin D, calcium (parathyroid hormone) are all things related to bone metabolism that might be checked for the "spine pain." Depending on age, you can check into getting a bone density scan, as you coul dhave problems with compression fractures that are causing pain... etc. Lots of options to explore, so talk to your doctor!
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2/2010 Malabsorption becomes dramatically noticable
3/2010 Negative IgA EMA; negative IgA TTG
4/2010 Negative biopsy
5/2010 Elimination diet; symptoms begin to resolve on gluten-free diet round two (10 days)
5/2010 Diagnosed gluten sensitive based on weakly positive repeat IgA & IgG TTGs and dietary response; decline capsule endoscopy.

Now, what to do about my cookbook in progress? Make it gluten-free?

#12 GlutenFreeManna

 
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Posted 08 July 2010 - 11:03 AM

Maybe if you gave us some more details about your situation we would be able to help you figure it out better. Are you a diagnosed celiac? Gluten intolerant? Or did you just decide to do the diet?

What do you eat on a regular basis on a "gluten free diet"?

What vitamins do you take?

Have you had any testing for vitamin deficiencies?

Do you have any other medical conditions?
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A simple meal with love is better than a feast where there is hatred. Proverbs 15:17 (CEV)

#13 T.H.

 
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Posted 09 July 2010 - 12:08 AM

Another possibility is that you are reacting to something that is more common in gluten-free foods.

I never had any gut issues, no known food allergies, before going gluten free. Felt worse AFTER going gluten free. Turns out, I have issues with some of the foods that are in gluten-free foods. One was sugar cane - it's typically less processed, it's added to EVERYTHING that's gluten-free, even the soup! But less processed means that you get more of the allergen, so it was making me really sick. I actually react to EVerything in the grass family, sugar cane, rice, you name it!

And corn. When I have corn, my back kills me too! my carpal tunnel flares up, my back and neck hurt, I feel exhausted and out of it. And corn is in a lot more gluten-free foods, as well as everything else (iodized salt, baking powder, you name it. You have to google corn allergies to hunt down everything it's in).

GI said that sometimes, the reactions from gluten mask other reactions you had to other foods, so that they show up more once you go gluten free. Don't know if that's the case, but it might be worth cutting down your foods to one ingredient ones for a week or two, rather than pre-made stuff, and keeping a food log to see if anything tracks with your symptoms. :)

Good luck!
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T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive


#14 missceliac2010

 
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Posted 09 July 2010 - 02:45 AM

Hello!

I too think that the people here can help you better if you give them all the background info first. My first post was very recently, and I swear it was more like a novel! I apologized for the length, but I got wonderful and helpful replies! Their is a wealth of knowledge and advice here on this site if you use the tool right.

That said, with the info given so far, S... I love your response and agree 100%. I have been so frustrated with accidental glutening over the past week that I wanted to scream! Today I vowed that I would eat simple, 1 ingredient foods. Guess what? I felt great all day! I will add more complex items that I enjoy eating one at a time, so I can start to pinpoint my allergies.

It seems cruel to know that not only do I have Celiac disease, but also food allergies?! But then again, I could have a much worse diagnosis. In the long run, Celiac is a totally manageable, do-able disease, if you have to get hit with one!

Good luck!



Another possibility is that you are reacting to something that is more common in gluten-free foods.

I never had any gut issues, no known food allergies, before going gluten free. Felt worse AFTER going gluten free. Turns out, I have issues with some of the foods that are in gluten-free foods. One was sugar cane - it's typically less processed, it's added to EVERYTHING that's gluten-free, even the soup! But less processed means that you get more of the allergen, so it was making me really sick. I actually react to EVerything in the grass family, sugar cane, rice, you name it!

And corn. When I have corn, my back kills me too! my carpal tunnel flares up, my back and neck hurt, I feel exhausted and out of it. And corn is in a lot more gluten-free foods, as well as everything else (iodized salt, baking powder, you name it. You have to google corn allergies to hunt down everything it's in).

GI said that sometimes, the reactions from gluten mask other reactions you had to other foods, so that they show up more once you go gluten free. Don't know if that's the case, but it might be worth cutting down your foods to one ingredient ones for a week or two, rather than pre-made stuff, and keeping a food log to see if anything tracks with your symptoms. :)

Good luck!


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Heather C.
July, 2010: Diagnosed with Celiac Disease via elimination diet and strong Lactose Intolerance via blood work. My symptoms of glutening include 1. extreme abdominal distention, 2. severe abdominal pain, 3. gas, 4. mood swings/generally negative and unpleasant to be around!

#15 Leeis2k

 
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Posted 10 July 2010 - 03:29 PM

Thanks to everyone again for all the reply's. The back pain has went away for the most part after taking some vitamin D. I'm starting to believe its a Zinc deficiency. After reading the foods that have Zinc in them, i realized that i getting NO Zinc in any of my foods. it would make sense because Wheat has Zinc in it and when my intestines healed it absorbed it and made be feel better (whlie also doing damage. Also my sex drive has been totally gone and that would also mesh with this theory.


I'm praying this is the answer, I've been fighting this for years and without insurance its been 100x tougher because doctors could careless about you if they don't get paid.
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