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Guest dfs

On gluten-free Diet But No Improvement

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Guest dfs

Hello - After 5 years of [his] enormous suffering and many MD visits and tests, we have learned our 30 year old son has sensitivities to gluten, soy, casein, and corn -- which we thought was good news, finally knowing what the problem was. However, 2+ weeks into the new diet, the symptoms are worsening and he is having difficulty getting out of bed today. We are rigidly following this restricted diet and will continue to do so, but are getting alarmed that there has been no improvement, tho' much of the literature suggests it usually occurs within a couple days of the new diet. I don't wish this health nightmare on anyone, but am asking if others have had a similar experience, and how long before signs of improvement start appearing. Any and all suggestions/shared experiences would be GREATLY appreciated. Thank you. - dfs

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From what I've read about others recovery times.....if he had alot of damage to his intestines, it will take awhile to heal. Give it at least 6 months. On the other hand he should feel better too.

Be sure to check all personal care products and if he is on any medications those also need to be checked. I just read something in Dangerous Grains where a person went gluten free and continued getting worse. Turns out most of the meds this person was on had gluten in them.

If those bases have been covered than it is time to start a food journal or have allergy testing done to try and pinpoint anything else that could be causing problems. There are alot of people on this forum that have multiple food sensitivities also, so he is not alone there. My info is in my sig but removing those foods has helped. Just wanted to share some of what I've read.

Welcome to the forum. You'll find a lot of knowledgeable and caring people here. :)


Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

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Since it has only been 2 weeks, he could be detoxing. This means that his body is still eliminating gluten from his system. Give it three months for real improvement. He has had this, unknown and untreated, for 30 years. That makes for a lot of damage, which needs a lot of time to heal.


Dessa

The Lord bless you and keep you; the Lord make His face shine upon you and be gracious to you." Numbers 6:24-25

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My doctor always tells me that it's okay for things to get worse before they get better. Once you've finally allowed for the body to heal, it begins the process of flushing all the ickies out


Courtney - 25

Columbia, SC

Gluten-free since July 8, 2006

Casein-free since October 16, 2006

Went six weeks, and fell back into a deliciously painful world of cheese.

Casein-free (again and for serious this time) December 11, 2006

Stupid cheese addiction....2/07

Dx Hypothyroid in 1993

Dx Gluten & Casein Sensitive through Enterolab 10/06

Dx Adrenal *Exhaustion* 2/07

Originally from WI, I am still in denial over my newfound casein intolerance. I fear I will not be allowed back into the state if I can no longer eat cheese and drink milk. This could pose some trouble over holidays when I wish to visit my family. It also poses a problem involving the severe rage I feel when I have to throw away somebody's unfinished cheese sticks. That is so wrong.

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Guest nini

it took me a minimum of 6 months to start feeling better, and almost 2 years before I felt really truly human. I was dx'ed at 34... it takes time to detox and get all the hidden glutens out of your life, and sometimes other intolerances such as dairy and soy rear their ugly heads after eliminating gluten from your diet.

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I am wondering what your son's symptoms are and if any in particular are getting worse. Two weeks is a pretty short time but the gluten intolerance could be a secondary problem not the primary.


A family with Celiac disease, two brothers and two sisters.

Lyme Disease, Diagnosis October 19, 2006

May 2006 - December 2008 Gluten and Dairy Free

December 2008, while seeing improvement on the gluten free diet, I did not recover and so in December of 2008 began the SCD and now have hope for recovery.

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Guest dfs
From what I've read about others recovery times.....if he had alot of damage to his intestines, it will take awhile to heal. Give it at least 6 months. On the other hand he should feel better too.

Be sure to check all personal care products and if he is on any medications those also need to be checked. I just read something in Dangerous Grains where a person went gluten free and continued getting worse. Turns out most of the meds this person was on had gluten in them.

If those bases have been covered than it is time to start a food journal or have allergy testing done to try and pinpoint anything else that could be causing problems. There are alot of people on this forum that have multiple food sensitivities also, so he is not alone there. My info is in my sig but removing those foods has helped. Just wanted to share some of what I've read.

Welcome to the forum. You'll find a lot of knowledgeable and caring people here. :)

From what I've read about others recovery times.....if he had alot of damage to his intestines, it will take awhile to heal. Give it at least 6 months. On the other hand he should feel better too.

Be sure to check all personal care products and if he is on any medications those also need to be checked. I just read something in Dangerous Grains where a person went gluten free and continued getting worse. Turns out most of the meds this person was on had gluten in them.

If those bases have been covered than it is time to start a food journal or have allergy testing done to try and pinpoint anything else that could be causing problems. There are alot of people on this forum that have multiple food sensitivities also, so he is not alone there. My info is in my sig but removing those foods has helped. Just wanted to share some of what I've read.

Welcome to the forum. You'll find a lot of knowledgeable and caring people here. :)

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Guest dfs

AndreaB - (Being new here, I'm probably botching up obvious way to reply....apologies). Thank you for response. Will look into personal care products. Re other "allergies," I have another newbie question. We learned about son's intolerances through the Enterlab stool test. Previously, oft-repeated allergy blood tests came back negative (i.e., for gluten, lactose, etc.). So, the question is: Is there a way to learn of an insensitivity/intolerance other than elimination diet? And yes, forum folks are wonderfully human, supportive...and EXPERT in all aspects of this condition. - dfs

Since it has only been 2 weeks, he could be detoxing. This means that his body is still eliminating gluten from his system. Give it three months for real improvement. He has had this, unknown and untreated, for 30 years. That makes for a lot of damage, which needs a lot of time to heal.

Thank you for response. We're starting to learn about "detoxing."

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Guest dfs
it took me a minimum of 6 months to start feeling better, and almost 2 years before I felt really truly human. I was dx'ed at 34... it takes time to detox and get all the hidden glutens out of your life, and sometimes other intolerances such as dairy and soy rear their ugly heads after eliminating gluten from your diet.

Hearing how long recovery can take, does help ease the anxiety about WHAT'S WRONG. We know we need to be constantly vigilant, and are so glad this forum exists.

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Guest dfs
I am wondering what your son's symptoms are and if any in particular are getting worse. Two weeks is a pretty short time but the gluten intolerance could be a secondary problem not the primary.

Thank you for response. Symptoms are: exhaustion, severe pain in entire abdominal area, bowel movements ranging from occasional blood in stool to severe BM urgency but little or no result. The nightime drill is to start tossing/fidgeting around 1am (turned in at 10), and then serious pain beginning around 4:00. These have all worsened since new diet start-up, tho' hunger level has increased. Prior medical exploratories were: multiple colonoscopies (all fine) and camera in small intestine (also fine). Diet was never addressed, as repeated bloodwork showed no allergies. (We learned about multiple intolerances through Enterolab stool test). We will stay on the diet, but welcome any chance to learn more about how to feel better and know what's going on.

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Hello and welcome,I am a mom of a13 years old son,It will take about 3 months to see any positive changes,but it will come.Does he drink enough water?drinking at least 2 liter of water a day,helps a lot.

My son is a different person now.

elisabet

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. . . Symptoms are: exhaustion, severe pain in entire abdominal area, bowel movements ranging from occasional blood in stool to severe BM urgency but little or no result. . .

Sounds like constipation. Does the gluten-soy-casein-corn restricted diet allow for enough fiber? Water?

Glad to hear his appetite has improved, at least his body seems to like this new intolerance-free food - even if he can't quite digest it yet.

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It took six months before I noticed any changes at all. It's been almost two years gluten-free now, and still I'm struggling with various problems. New sensitivities have been cropping up, but until I figured them out I'd be doing worse.

This board and its members can be most helpful. I hope you obtain the answers you need.


A spherical meteorite 10 km in diameter traveling at 20 km/s has the kinetic energy equal to the calories in 550,000,000,000,000,000 Twinkies.

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So, the question is: Is there a way to learn of an insensitivity/intolerance other than elimination diet? And yes, forum folks are wonderfully human, supportive...and EXPERT in all aspects of this condition. - dfs

No other way to look for allergies that I know of.

A website you might want to look at is by someone who does not eat gluten/dairy/soy or corn. It is www.dogtorj.net. Look for an article by the name of Answer. I copied the article from his old website.....the new one has a revised copy I believe....just less wordiness. I haven't read the whole article yet but have been amazed by what I have read. He also lists things to eat to really benefit in healing if there are any other autoimmune responses aside from celiac. He does go through food ideas for a typical day I think.


Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

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Hi everyone,

I was recently diagnosed with Celiac disease. I have been on a gluten free diet for two weeks now. It is hard, but I am getting use to it. Every now and then I have bathroom problems and I know it is just because I am still healing. I am eating everythign gluten free and making sure medication is also. I am on the run everyday of the week from 8 am till 9 at night as I am in school trying to get my Masters degree. It is very difficult when I get sick at school, work, or even when I am seeing clients. I know where every bathroom is everywhere I go, and it takes me about an hour or two to get ready just because I spend most of that time in the bathroom. I am embarresed to be around my friends as I might get sick and everytime I go somewhere (especially in the mornings) I usually have to stop about twice to use the restroom on the way to my destination. I was just wondering how everyone else deals with this? I am almost at the point where I just don't want food! I have taken imodium before but I hate the way it makes me feel. Does anyone have any suggestions for me? I know it will just take time, but it needs to hurry up and get better as it is running my life!

THanks, Mere

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Hi everyone,

I was recently diagnosed with Celiac disease. I have been on a gluten free diet for two weeks now. It is hard, but I am getting use to it. Every now and then I have bathroom problems and I know it is just because I am still healing. I am eating everythign gluten free and making sure medication is also. I am on the run everyday of the week from 8 am till 9 at night as I am in school trying to get my Masters degree. It is very difficult when I get sick at school, work, or even when I am seeing clients. I know where every bathroom is everywhere I go, and it takes me about an hour or two to get ready just because I spend most of that time in the bathroom. I am embarresed to be around my friends as I might get sick and everytime I go somewhere (especially in the mornings) I usually have to stop about twice to use the restroom on the way to my destination. I was just wondering how everyone else deals with this? I am almost at the point where I just don't want food! I have taken imodium before but I hate the way it makes me feel. Does anyone have any suggestions for me? I know it will just take time, but it needs to hurry up and get better as it is running my life!

THanks, Mere

Is taking a medical leave of absence an option? Staying so busy has to have some effect on your recovery. A couple of weeks or a month off might make all the difference.

Tom

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Starting gluten-free is always hard.....

some really lucky people get positive effects really quickly, others take longer.

Sometimes those who react well immediately then go through a phase of reacting badly...before they feel better again.

Nearly everyone who starts a gluten-free diet looks back in 6 months and see's they were not really gluten-free and see's where they got caught out. Hidden gluten and cross contamination are the main culprits not bread or pasta.

Withdrawal is also a common factor... and can make the intial recovery a bit rocky...

Another common thing is we often start eating more of other allergens like soy and dairy.

You just have to TRUST US when we say keep at it... check and recheck everything.. don't take risks and nearly everyone does get much better. I wish i had a magic wand and could transfer all out knowledge...

Search this forum for cross contamination (CC) ....

What seems to happen is when we are newly diagnosed we are most vulnerable., many find out that they react to soy and milk but this seems to subside in many after the gut heals.

Also as you get better the healing overtakes the damage from gluten you get more value in terms of nutrients from food and your body self-heals better.

When you start out a single incident like eating at a resto can knock you back weeks... after a few months it knocks you back but your body is ion a better position to heal, adsorb nutrients etc. etc.

The best advice is start out paranoid... don't have any gluten in your kitchen and don't use the same utensils ... spouses, kids etc. need to get on board... (this is usually temporary but its most important in the beginning)

This all sounds drastic and it is.... but its the fastest way I believe to get through the hardest part and put it behind you.

Again.. check CC..... and hidden gluten....

avoid extra additions like soy and increased dairy and think of cutting them out altogether or at least spend a week without and see.

check CC again!

the best thing you can eat is fresh fruit, vegetables, fish and meats all prepared from scratch... if you can't do this then the closer the better!

BE PARANOID.... its only temporary but see gluten as the enemy, its wily as a coyotte and its out to get ya.

and did I mention ... check CC!


Fere libenter homines id quod volunt credunt. (JC, De Bello Gallico Liber III/XVIII)

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I made several mistakes :lol: in the beginning ... OK, I still do ... :)

The worst thing I did was to immediately start eating gluten free processed grains like they were going out of style ... Empty calories. And I am hypoglycemic. :blink:

The other huge mistake was to start drinking meal replacements. Most meal replacements have something, even in the minute form, that I am sensitive to. Check them all thorougly. :ph34r:

Other than that I would look at all the new foods that you have just introduced.

Hope this helps. Marcia


Jan 1990 - Dx CFS/ME/FM (URI's, Ataxia, myoclonus, orthostatic hypotension, insomnia, brain fog, swollen lymph nodes, sore throat... ) Completely Disabled (housebound and bedridden at times)

2004 - Digestive pain all the time.

May 2004 - Hiatal hernia, erosive gastritis, gastroparesis (endoscopy)

August 2004 - Colon polyps, diverticulitus, internal hemorrhoids (colonoscopy)

No relief from Nexium, Prilosec, Protonix, Zelnorm, Miralax, Imodium, Lomotil ...

July 2005 - GP recommended WFDFSFEFCF + vegan (Also, anything that hurts free)

Immediately stopped needing naps and digestive pain reduced.

Sept 2005 - GFDFCFSFEF + chemical free - Immediately stopped feeling jittery / buzzing and digestive issues were much better.

June 2006 - Dx B12 and iron deficient. Started B12 injections and using cast iron pan.

August 2006 - MYOCLONUS GONE. (off Klonopin)

September 2006 - ATAXIA, INSOMNIA and Feeling like the floor was moving under my feet gone.

June 19, 2007 - Positive DQ2, Dx Celiac

October 2007 - Sleeping like a baby, waking up with energy, but still having fatigue/stamina issues

Nov 2007 - Started Paleo diet for chronic hypoglycemia

April 2008 - GTT normal. I'm no longer hypoglycemic. Started Low oxalate diet for kidney stones.

May 1, 2008 - Began salt loading for OI/NMH - noticed immediately muscle weakness was gone. I was sodium deficient but my labs don't reflect it. Still working on OI and PEM.

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In addition to all of the good advice above, I found that cutting out all processed foods and even the gluten-free grains made a huge difference.

Maybe go to a diet of whole, natural foods (meats, fish, eggs, veggies, fruits) until you're feeling better. Then, try adding foods back in, one at a time.


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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In addition to all of the good advice above, I found that cutting out all processed foods and even the gluten-free grains made a huge difference.

Maybe go to a diet of whole, natural foods (meats, fish, eggs, veggies, fruits) until you're feeling better. Then, try adding foods back in, one at a time.

THANK you everybody for all of your great advice! :) I am going to try it all! :)

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The damage doesn't heal overnight just like it doesn't happen overnight. I am 9 mos gluten-free, and am just now tolerating even most gluten-free foods. He should stick with fresh, "whole" foods rather than processed foods. Baked chicken, rice, kale, bananas (and, oddly, apples) were about the only foods that I could tolerate for a long time, until real healing began to take place.

I, too, ached and felt like a train wreck for quite a while after going gluten-free. Hang in there. gluten-free is the way to go, and it does get easier and he WILL feel better one day in the not-too-distant future.

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The damage doesn't heal overnight just like it doesn't happen overnight. I am 9 mos gluten-free, and am just now tolerating even most gluten-free foods. He should stick with fresh, "whole" foods rather than processed foods. Baked chicken, rice, kale, bananas (and, oddly, apples) were about the only foods that I could tolerate for a long time, until real healing began to take place.

I, too, ached and felt like a train wreck for quite a while after going gluten-free. Hang in there. gluten-free is the way to go, and it does get easier and he WILL feel better one day in the not-too-distant future.

I have another question to ask everyone. For some reason, When I wake up, I get sick and then after about an hour I am fine for the rst of the day. Is this normal? Do most of you get sick in the morning before you have even eatin any food at all!?

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I have another question to ask everyone. For some reason, When I wake up, I get sick and then after about an hour I am fine for the rst of the day. Is this normal? Do most of you get sick in the morning before you have even eatin any food at all!?

i totally got worse before i got better and i was pissed because everything i had heard and read (before i found this site) was that you get better within two weeks. so not true. it took me about 3 months to feel normal. and i was defintley more sick in the morning and still am sometimes. exact same thing with me an hour after im sick i feel normal for the rest of the day!!! so weird that someone else has the same thing!

Jess


Diagnosed in March 2006 after being in the hospital due to pancreatitis due to undiagnosed celiac

years of being told i had IBS, taking numerous IBS medications (since the age of fifteen)

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Hello - After 5 years of [his] enormous suffering and many MD visits and tests, we have learned our 30 year old son has sensitivities to gluten, soy, casein, and corn -- which we thought was good news, finally knowing what the problem was. However, 2+ weeks into the new diet, the symptoms are worsening and he is having difficulty getting out of bed today. We are rigidly following this restricted diet and will continue to do so, but are getting alarmed that there has been no improvement, tho' much of the literature suggests it usually occurs within a couple days of the new diet. I don't wish this health nightmare on anyone, but am asking if others have had a similar experience, and how long before signs of improvement start appearing. Any and all suggestions/shared experiences would be GREATLY appreciated. Thank you. - dfs

If it's only been two weeks, he could still be going through some nasty withdrawls, too, especially coming off ALL those foods. Both gluten and casein can act as opiates on the brain and cause nasty withdrawl symptoms.

Good luck to you and your son!

Shalia

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