Celiac.com Sponsor (A1):



Celiac.com Sponsor (A1):


Archived

This topic is now archived and is closed to further replies.

LilyCeliac

Does Anyone Actually Feel 100% Better?!?!?!

Recommended Posts

So I've been gluten free now for 5 Months.

My headaches, joint pain, and stomach cramps have definitly improved.

The only thing that hasn't improved is my bowel movements. I can't remember the last time I have had a normal one! I haven't been getting the Big D as much as I used to but their still not normal. I'm still having to run to the toilet at the most inconvenient times, many times a day. I also have alot of gas before I go which is also VERY ANNOYING! I also occasionally feel nauseous.

Just wondering if I will ever feel completely normal again? Does anyone actually feel 100% better? It's to a point where I don't know if I will ever be back to my normal self no matter how much work I put into this diet.... I'm so paranoid now every time I'm somewhere where there isn't a bathroom near by. It's really interfering with my life and I'm so sick of it!

Did anyone else feel this way or have this same problem? Is there anything anyone did to make them better?

I think I may try making my diet more strict for a while and see if that helps. Cut out dairy completely too maybe.

Share this post


Link to post
Share on other sites

Join eNewsletter


Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8):


I think I may try making my diet more strict for a while and see if that helps. Cut out dairy completely too maybe.

Question- put dairy aside for a moment- What do you mean, when you say "making my diet more strict?" What does that mean to you?

Does that mean you're not very cautious about cross contamination in your home? Or does it mean you eat out a lot? Or does it mean you sometimes cheat a little? Have you not switched to gluten-free cosmetics and cleansers? Eat foods that are often contaminated in production (i.e. Frito-Lay products)?

All of the above can/will truly make you sick. If I'm off base, sorry! :D It's just that the diet needs to be super strict. The more ways you're not strict, the more likely you are to be sick. If you CAN make your diet more strict, I'd do that before cutting out dairy if it were me.

My mom has been gluten-free for a year now, and is still working out the kinks. She was terribly ill at diagnosis, hospitalized for dangerous dehydration, etc. She has found that she can tolerate dairy in small doses, but if she eats it too often, it will make her sick. She's also found that she reacts to ALL modified food starch, no matter what it's derived from. As of now, she doesn't think she reacts to other forms of corn. (I personally wonder...)


-Sarah

--Son, Lucas, age 7. Gluten-free since May 2007

--Son, Ezra, age 5. Gluten-free 10/13/07. Bipolar tendencies, massively improved on gluten-free diet! He's also allergic to a jillion antibiotics.

--My mother has Celiac Disease, dx'ed by Positive Blood Tests and Biopsy. Diagnosed Sarcoidosis 6/08.

--Myself, Gluten-free since 8/07

Time heals all hurt of heart... but time must be won.

Share this post


Link to post
Share on other sites

Join eNewsletter

Dairy is a great place to start! I'd put money on it that it's the culprit...


~Ill for 5 years with progressive symptoms: anxiety, brain fog, joint pain, "D", and the noisiest stomach you've ever heard, and a lovely itchy rash on my buttocks, scalp, and sometimes thighs. ~ Family history of Celiac disease (Uncle, cousins, grandmother) ~ Blood work showed some antibodies but not enough to be dx celiac ~ Dq7 & Dq4. ~ I can't call myself Celiac but I know gluten is bad for my body.

Share this post


Link to post
Share on other sites

Join eNewsletter

Thanks!

and to clarfiy what I meant by "be more strict with the diet": I do follow a strict gluten free diet, I am careful about cross contamination, I've stopped eating out, or eating anything that I'm not 100% sure is gluten free. So this is why I am wondering why I'm not feeling better yet.

It could just be that It's going to take longer for me to fully heal. Or I think It could be that I need to fully eliminate Dairy from my diet. I was trying to keep dairy in my diet in small doses but maybe I should completely take it out for a while and see if that helps.

But basically I'm just wondering if anyone with Celiac actually feels 100% better after being gluten free? and How long did it take? Just wondering if theres going to be light at the end of this tunnel!

thanks for the advice so far! I really appreciate it!

Share this post


Link to post
Share on other sites

Join eNewsletter

But basically I'm just wondering if anyone with Celiac actually feels 100% better after being gluten free? and How long did it take? Just wondering if theres going to be light at the end of this tunnel!

From what I remember reading last year there is generally a gradual feeling better but if your damage is severe that may take awhile. One poster felt better after a year but didn't feel really good til after 2 years.


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.

Share this post


Link to post
Share on other sites

Join eNewsletter

Its a toughy...

I think many of us go through stages but there are often plateau inbetween.

For me after 6 months I thought I was gluten-free ... and 6m-1yr I stagnated .. then after 1 yr I went back to basics.

Everything made myself... no gluten in the house at all.

It coincided with me moving and I just threw out any dodgy items and kitchen utensils and the like. Also I really identified things that were iffy. I used to get some tortilla chips which I found out were made in the same lines as some flavored ones. I stopped eating this type of food as well.

This was like a final bit in the puzzle for me.


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

Share this post


Link to post
Share on other sites

Join eNewsletter

I have been gluten free for a year and a half and i still have issues. I don't get as bloated, and no more bathroom issues, but i still need to nap during the day, my hair still falls out alot, still a bit dizzy and off balance, and a little nausea. I am very careful what i eat and this is still happening to me, but all in all i do feel better, it just takes time i keep hearing. Somedays are better than others and when i'm having a good day i totally enjoy it, because it doesn't last. I found out i had celiac at the age of 46, they say the older you are the longer it takes to heal, and i have no idea how long i had been suffering with celiac. I just don't know.

Take it day by day, that's all you can do.


Diagnosed with Celiac Disease on March 27, 2006 via blood and biopsy.

Diverticulitis

Hiatial Hernia

Acid Reflux

H-Pylori

Colectomy and appendix removed June 5, 2008

Share this post


Link to post
Share on other sites

Join eNewsletter

I have been gluten free for about four months now. However I did a gluten challenge for tests, but cut that short when I was told it would take four months to build up the antibodies in my blood stream. I have been able to reduce my asthma meds by three quarters. However after ingesting the gluten, my ears became blocked almost immediately and I had a weeklong bpout of dizzyness. So I am now convinced, especially after eating some fries today that had a malt coating. I started getting tummy pains after just after an hour and a half.

Now I am sold. However my idiot doctor still wants to confirm the diagnosis. I think I shall have to threaten to sue if he refuses to acknowlege my condition.

Share this post


Link to post
Share on other sites

Join eNewsletter

My daughter does but I've always heard kids heal faster. We did cut out all dairy for a long time and reintroduced it slowly.

Is it possible that you may have some food allergies or intolerances along with the celiac? Allergy testing and/or a food journal may help you figure out if there could be other foods making you sick.

Hope you're feeling much better soon!

Share this post


Link to post
Share on other sites

Join eNewsletter

Me too! I need to read about the light at the end of the tunnel to help me through this as well. Today is 6 months to the day that I was diagnosed and I just got over the worst glutening of my life. I'm definitely not positive about it today! This post was helpful though. Thanks for posting the question!

But basically I'm just wondering if anyone with Celiac actually feels 100% better after being gluten free? and How long did it take? Just wondering if theres going to be light at the end of this tunnel!

Share this post


Link to post
Share on other sites

Join eNewsletter

I will tell you unequivocally that it IS possible to feel absolutely wonderful after being diagnosed with celiac disease. I went 18 years before I was diagnosed. I was clasically, drastically sick for most of that time. I went many years having to get fed daily through an IV just to survive. I had to be hospitalized and was near death from malnutrition just before my diagnosis. Once I got my diagnosis and removed gluten from my diet and my life, I experienced a rapid turnaround. Within 3 days, my D went down from 50x a day to only 3. Slowly and steadily, I saw improvement, and within a few months I was symptom free. I used to have to take 8 prescription meds a day just to stay alive, and now I don't take any. I never even get colds anymore!

I know you have heard it a million times before, but it does take some time for many people to recover. I had the benefit of IV nutrition that bypassed my gut entirely, so maybe that is why my bounce back was so quick.

Honestly, if you are still feeling such symptoms after 5 months, it really seems like you either haven't been as gluten-free as you think you have (this is not a criticism - there is a step learning curve with this diet and mistakes do happen), or you have something else going on. Maybe another food intollerance? Have you ever tried to keep a food diary to track your symptoms? I know it is a lot of work, but it might give you some answers. Maybe you could try ratcheting down to the basics and add new foods one at a time and track your reactions. Many people here have learned a lot from an elimination diet. I think your instinct to eliminate dairy, at least for a while, is a good one. Have you also checked and double checked your medications and topical products for gluten?

I just wanted to post and tell you to have hope because it does get better, and it is possible to feel great on a gluten-free diet.


-Colleen

Dx 8/05 via bloodwork and biopsy (total villous atrophy)

13-year old son Dx 11/05 via bloodwork and biopsy

Daughters (16 and 5) have tested negative via bloodwork

A woman is like a tea bag - you never know how strong she is until she gets in hot water. - Eleanor Roosevelt

Share this post


Link to post
Share on other sites

Join eNewsletter

basically I'm just wondering if anyone with Celiac actually feels 100% better after being gluten free? and How long did it take? Just wondering if theres going to be light at the end of this tunnel!

Hello, LilyCeliac

I do, but that target of feeling 100% keeps shifting. I've been off gluten for 2 1/2 years, and I still think there's possibility of feeling better.

I can still remember sitting waiting for my appointment in the nutritionist's office that led to her telling me she thought I had some kind of wheat and milk intolerance, stoned with fatigue, a body throbbing with aches, localized pains, in such a fog that I couldn't think; I wondered if I could make it waiting...I was nearly in an out of body experience, like I was down a long tunnel. The walls of the waiting room looked like they were wavering.

Everyone's recuperation has different features to it because we all begin with different bodies each with different challenges in addition to celiac disease. AnneM may be right about the effect of chronological age, but I've read about the lives of some pretty sick folks who are in their twenties on this site. The problem caught up with me as I was going through the menopausal change in my mid fifties...Anne may be right: my body coming through the change seems to be different in so many ways: different metabolism, different sleep needs, etc.

I wonder if the question were asked, what has been your sequence of improvement: what improved and stayed improved first, what came second, what came third, whether there would be any similarities among people posting their sequence.

Since you ask about feeling 100% or not, that's a mind-body thing, a perceptual thing; involves emotions and attitudes, as well as things like bloating.

Here's my sequence...I did most of this following the list that is posted on the home page of this site as scrupulously as I could, and cooking in a non-gluten kitchen...I think I dodged a lot of bullets, from what I have read on this site...I've been a member and reading for a couple months...I did some things right, but not out of any wisdom about it. I went into a non-CC situation pretty immediately, and because I didn't eat out much anyway and (a little black humor here, I got dumped by someone for someone else in my sick years) I wasn't kissing anybody who had just eaten toast for breakfast. So below I think is the payoff of a strict glutenfree diet over time. Everybody's body is different:

  • First my brain fog began to lift, in the first weeks off. It took awhile to clear
  • This immediately lifted my spirits, but didn't "fix" them, of course, but I had some hope
  • Then sleep producing rest began to improve in about a month or two...that was a long recuperation process. Sleep patterns change anyway beginning about your forties, and stress affects it, so there's more than celiac to deal with, regarding sleep...
  • In time the mouth sores cleared up
  • Then gradually body aches and localized pains and foot cramps began to disappear; I still get occasional foot cramping at night.
  • It took a long time, maybe a couple years before my daily energy returned to its ordinarily high level...I'm 59 now; this is an issue for me; I will have to work till I'm 70, and currently am doing all my yardwork and as much repair of the house as I can muster, to save money. Plus I want a social life. I had none, zip, zero, in the bad years. It's a money but also a time and energy thing: I'm about to take the first vacation I've had in 6 years. Work had taken so much much more time to get done when I was sick.. :) I consider being able to take a vacation because my work is not in a tailspin part of recuperation!

I've been scrupulous about avoiding gluten; still have the irritation of the bloating and gas from a minor milk intolerance but have found a few cultured dairy products that don't send me running...goat cheese is the present experiment; never have "ordinary" stools, but I don't care about that, what I care about is whether they show I've been glutened or not or whether they look like I'm not absorbing food nutrients...in other words, some physical symptoms I now am using as indicators that tell me to watch out. My gut will never not be susceptible to gluten, so I will always be liable to ingesting something that makes me sick. I'll never get over that, so in that way I'll never be 100% always will be on the threshhold of getting sick if I eat the wrong things.

A body isn't an unfixed/fixed thing as I see it, but susceptible to all kinds of things....I don't for example have any way of guessing how much a "set point" for having gluten intolerance symptoms varies according to age, but also to the general condition of the immune system (such as, for example, after having caught the flu), or to things like mood, or other diseases.

I'm convinced that seeking wellness really never ends.

  • One thing that happened to me in the bad years which coincided with going through menopause was that my weight ballooned up and I became extremely sedentary.
  • I lost a lot of self confidence. My muscle also began to atrophy...this will happen to anyone sedentary, male or female, if you sit still long enough. This led to back pain. I got a frozen shoulder. I began to damage ligaments. My slumping, because my muscles weren't holding my body the same way, began to produce the early conditions of dowager's hump, which is in its first stages loss of musculature.
  • Well, cross my fingers but I'm losing some of that weight now, and every week that I succeed in getting some real exercise, not piddling around with it, gives me something in flexibility. It took 8 weeks in PT to work out most of that frozen shoulder, and I'm still working on it. My back doesn't hurt any more...except when I go sedentary...in other words, I'm not out of the woods yet, but I'm feeling much better.
  • I can now walk downstairs in a pair of high heels without holding on to the handrail. Seems like a small thing, but that means I have rebuilt the muscles in my knees and upper thighs to a point that I can do that. That means that I can squat down to pick something up, and then get back up without staggering, which does a bit for my sense of wellbeing, because wellbeing to me includes being able to do things, and my state of mind.

I am DEFINITELY into the move it or lose it, post 50s stage of my life, mentally and very definitely physically....that may sound depressing, but that's just the way it is for me. I'm still adjusting to that, but I had better figure out how to be happy with it. It doesn't make sense to want to be 20 again (the one thing that really pi$$@$ me off is my sagging bustline, but that's not a celiac problem :lol: ). I'm not trying to get back to B.C. (before celiac), I'm looking for how well I can be now.

All of this except the bust...and the lines on my face...and the cellulite, dang it, but maybe that's partially a product of being sedentary too, I believe is part of recuperation from having an intestinal tract in bad shape in my fifties...I get glutened now and then, like anyone else who has celiac disease. I don't have any idea what it's going to be like to be a 70 year old celiac, with that body...will my susceptibilities change? Dunno.

That's a long answer. It took me a couple years of finding out what did me in and how to avoid it plus recuperate from the really "sick" sickness parts of it.

I feel pretty good, am delighted to get that energy back... there's quite a ways to go. I say expect that it's a long journey with ups and downs, but that there IS light.

You go, girl.

Share this post


Link to post
Share on other sites

Join eNewsletter

Thank you Centra for taking the time to reply. I post will help alot of people I'm sure. I'm around the same age and have been through a lot of the same stuff.

I just want to add a couple of other things to look for. I've found it helped to not eat all the rice breads and G.F. mixes and other high carb. foods. I felt great going gluten free for the first month. I was however eating mainly protein, vegetable, some fruit and brown rice. Then I went crazy with all the foods I could have just because they were "gluten free".

I started to feel terrible again. Achy joints, insomnia, anxiety, crabby, etc. I got very moody and figured out it was hypoglycemia. I feel best if I can keep those carbs low.

Also it helps me to limit foods high in lectins if you want to do a google on that subject. Those are grains and beans. It became more clear to me why I was feeling like I was eating the gluten free alternatives.

I don't know if you have acid reflux problems but those problems resolved after giving up tomato sauces especially and potatoes. These are nightshades and they also include peppers. You can find out more if you read under the "other intolerances" part of this forum. Night shades and oxalates is a good gone.

So gluten was just the beginning to a long road of tweaking my diet to finding out how I feel the best. I don't know if you want to hear that, but take your time and read, read, read. It always helps.

Gail


Gluten Free since Jan. 06

Gluten intolerant. DQ 0301 DQ 0602

Lactose intolerant.

Share this post


Link to post
Share on other sites

Join eNewsletter

I was like that, too. After going gluten-free and lactose free, I found myself asking what the heck is going on here. I was so angry because I wasn't eating gluten, but I was still getting sick. Very, very, very frustrating.

Casein was the No. 1 culprit for me, not lactose. That means no butter, either, and gotta watch all margarines for any dairy.

Now I've gone off soy, and there has been a dramatic, dramatic improvement. I've had 3 days of normal bathroom trips, but one relapse but I believe was a soy CC. I'm not bloated. No headaches. My face has exploded in acne, but the same thing happened when I initially went casein-free.

Try eliminating ALL dairy and see what happens. If that doesn't do it, try eliminating ALL soy. I've read that 40% of people who are casein-intolerant are also soy-intolerant (not sure what that research is based on, though). Soy is hidden in a *lot* of things -- salad dressings, sauces, spices, margarines, vegetable oil -- just like gluten, so it took me a good two weeks just to identify every food that I routinely ate that had soy in it.

I have then heard of people who could reintroduce soy or dairy after 6 months to a year of abstaining. I'm certainly hoping that is the case with me -- I miss ice cream.


"I'm not telling you it's going to be easy. I'm telling you it's going to be worth it." - Art Williams

Currently gluten-, casein-, soy- and nightshade-free.

Share this post


Link to post
Share on other sites

Join eNewsletter

I feel 100% better. I'm lucky in that celiac is the only intolerance I have (expect for peanuts, but that wasn't too hard to figure out and eliminate). Once I figure out the celiac, I didn't have to keep investigating for more health issues. Hang in there - you'll figure it all out eventually.


Gluten-Free since September 15, 2005.

Peanut-Free since July 2006.

Share this post


Link to post
Share on other sites

Join eNewsletter

Yes, there is a light.

I was diagnosed August 2005 and today I am 100% free of Celiac symptoms. I had a short time with a diary intolerance but that is now relieved.

I feel that it is an impossibility to be 100% gluten free and in the past year, I am sure that I have been exposed to gluten, yet I no longer react. As I stated on another thread (Healing And I Never Get Sick - Post Diagnosed), I have come to the conclusion that it would take repeated exposure over an unknown period of time for me to react with the usual diarrhea, fog and ataxia issues that I used to have.

Aside from other intolerance's, yes, life can be as normal as anyone. Look for the light. (let the yeti lead :P )


Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

Share this post


Link to post
Share on other sites

Join eNewsletter

Look for the light. (let the yeti lead :P )

:lol: Love how you slipped that one in there (and hardly anyone knows what you're talking about you nut!!!!!!!!)

Lily,

I feel unequivocally and incomprehensibly better and symptom-free. :) It's been nearly two years, but I noticed a difference right away.......then started eating tons of gluten-free cookies/snacks - got worse - cut those out. Also cut out all dairy for about three months, but I can eat it now with no problems.

Everyone gave great advice. You've got to work out the kinks - definitely remove dairy for a while and most, if not all processed foods, and see how you feel.

We're here for you!

:)


SUSIE

Diagnosed January 2006

"I like nonsense. It wakes up the brain cells." ~Dr. Seuss

Share this post


Link to post
Share on other sites

Join eNewsletter

I read somewhere that you take your age and then subtract 20 - (that is if you are over 25, if I remember right) - So if you are 50 - 20 = 30 --- that is how many months it will take to get your enzymes and your good bacteria (3 to 5 pounds) back to where it needs to be. Of course that is assuming no problems in between. Try to filter out the chlorine in your water, that helps too!

I took probiotics for 6 months, and stopped - went right into eating a lot of raw food, about 75%-80% all raw, in fact I have been eating oranges for over a week now - that was one food that I could not tolerate for over a year. My stomach would hurt so bad, it was unbearable! I even had fresh lemon aid yesterday - unheard of for me!!! I know we all have so many issues to deal with, but the more raw food that you eat, the more enzymes you will have to help aid in your digestion. You can only get enzymes from the raw food that we eat...or by pills, and I can't do those. ( If you do start eating raw food - go slowly!) You may find there is still somethings you can not eat....I can not eat dandelion leaves, or kale - I get itchy. You find dandelion leaves a lot in pre-packaged salad bags.

I was suffering from fatigue so badly, I now eat dulse in my salads, it is a natural form of many trace minerals - including B vitamins too. In a forth of a cup, it has 23% of vitamin B12. I put it right in my salads and it is a natural salt. It took many, many months, while I was so ill and in bed, reading many books to find this natural source. All of the vitamins and minerals from this are natural. It must be in a raw form.

If the equations above is correct I still have many months to go, but I do feel better excluding white sugar, and flour, I can barely tolerate the gluten free flours at all. Milk gave me the worst side pain anyone could imagine, now milk free, no side pains anymore !! Greens have more calcium than milk anyway, and I was not aware of that. I get ill when I eat many, many processed foods. High fructose corn syrup is a killer for me. ( I now use agave nectar for sweetening things) It is hard at times to eat this way, but my health and my digestions is much, much better. Even my eliminations are much better. Don't get me wrong, I am still in the process of healing, but if I had been eating this way years ago, I know I would not be facing the issues I am today.

I am just sharing what is helping me, I know that we are all different, but yet alike by a gluten bond. I am just trying something on my own since the doctors here can't even read a simple blood test for celiac for themselves or explain it to a new celiac patient, my husband. When I was dx, I was just told I have celiac, and given a 3 page letter telling me what I should avoid, and somethings I could eat, no other help or advise, not even what celiac was!!! btw, there was not even one fruit or vegetable on the pages!!

I learned of Lara Bars here on the site from someone saying they were gluten, soy, dairy free - do you know that many of the Lara Bars are 100% raw = healthy!


Feb 9, 07 - Positive gene test D2 -Celiac Disease and Positive D3 for Gluten Sensitivity-Double Whammy!

Positive blood test for antibodies for celiac

SEVERE Gluten Ataxia - trouble speaking - could not even turn my head side to side - almost bedridden

March 07 - 2 different doctors have documented my records as confirmed Celiac

Oct 07 - found a secret to feeling better - no processed foods - The healing comes from eating raw vegetables, and fruits!

Husband - tested = celiac gene+diabetes gene

3 children-

youngest - doc wont test has w/ Hashimoto Disease

middle- tested = celiac gene+lymphoma gene - dx-celiac

oldest - ignores warnings

Share this post


Link to post
Share on other sites

Join eNewsletter

This is totally off the subject, but I've begun to wonder about the food starch/sulfite connection. I react rather violently to corn starch, but not so to some ground corn or corn flours, particularly organic products. At first I assumed it was a corn allergy, but after having minor reactions to other gluten-free baked products with potato starch or dried potato products in them I'm starting to wonder. I have given up drinking wine because of the sulfites, but until recently did not realize that sulfites were used to process all starches and dried potato products. So I guess my question is, does you mother have issues with wine as well? Wine is usually how most people become aware of a problem with sulfites.

And for the original poster, I found once I stopped eating gluten that I became aware of reactions to other foods that also caused bloating and gas. The gluten literally seemed to mask the other allergies I had. The best way to figure out if that is the case is with a food diary. Keep track of what you eat and how you feel and see if you can find a pattern.

Violet

My mom has been gluten-free for a year now, and is still working out the kinks. She was terribly ill at diagnosis, hospitalized for dangerous dehydration, etc. She has found that she can tolerate dairy in small doses, but if she eats it too often, it will make her sick. She's also found that she reacts to ALL modified food starch, no matter what it's derived from. As of now, she doesn't think she reacts to other forms of corn. (I personally wonder...)

"My mother always told me, it's okay to play with a man's mind

as long as you put it back where you got it when you're done with it."

Share this post


Link to post
Share on other sites

Join eNewsletter

I am only a few weeks into this and although generally I feel better I still have a very nagging pain in the lower right side..no appendix or female stuff left so I can't figure out what this is about. I am not sure if it is a cross contamination problem ( I try to be so careful, but I do have teenagers in the house) or if there is another problem. I have been in and out of the doctor's office so often over the last several years I just can't bring myself to go in again. When I was finally diagnosed my numbers were "sky high" so I am hoping this is just residual pain...anybody else have problems like this...always in the same spot?

I was like that, too. After going gluten-free and lactose free, I found myself asking what the heck is going on here. I was so angry because I wasn't eating gluten, but I was still getting sick. Very, very, very frustrating.

Casein was the No. 1 culprit for me, not lactose. That means no butter, either, and gotta watch all margarines for any dairy.

Now I've gone off soy, and there has been a dramatic, dramatic improvement. I've had 3 days of normal bathroom trips, but one relapse but I believe was a soy CC. I'm not bloated. No headaches. My face has exploded in acne, but the same thing happened when I initially went casein-free.

Try eliminating ALL dairy and see what happens. If that doesn't do it, try eliminating ALL soy. I've read that 40% of people who are casein-intolerant are also soy-intolerant (not sure what that research is based on, though). Soy is hidden in a *lot* of things -- salad dressings, sauces, spices, margarines, vegetable oil -- just like gluten, so it took me a good two weeks just to identify every food that I routinely ate that had soy in it.

I have then heard of people who could reintroduce soy or dairy after 6 months to a year of abstaining. I'm certainly hoping that is the case with me -- I miss ice cream.


Confirmed by endoscopy and blood tests October 2007

Donna

Share this post


Link to post
Share on other sites

Join eNewsletter

Oh my gosh, YES!!! Before I was diagnosed I thought I had gallstones or something. It would bother me all the time. Right below the right ribcage, like at the area that would be the top of the "six pack" if we had perfect abs right? I used to pinch that area to try and get the pain to go away. It was terrible. I am much better now and only feel it once and awhile. Mainly, I think when I eat more fatty foods.

I am only a few weeks into this and although generally I feel better I still have a very nagging pain in the lower right side..no appendix or female stuff left so I can't figure out what this is about. I am not sure if it is a cross contamination problem ( I try to be so careful, but I do have teenagers in the house) or if there is another problem. I have been in and out of the doctor's office so often over the last several years I just can't bring myself to go in again. When I was finally diagnosed my numbers were "sky high" so I am hoping this is just residual pain...anybody else have problems like this...always in the same spot?

Share this post


Link to post
Share on other sites

Join eNewsletter

Oh my gosh, YES!!! Before I was diagnosed I thought I had gallstones or something. It would bother me all the time. Right below the right ribcage, like at the area that would be the top of the "six pack" if we had perfect abs right? I used to pinch that area to try and get the pain to go away. It was terrible. I am much better now and only feel it once and awhile. Mainly, I think when I eat more fatty foods.

It is below my ribcage but above my hip bone...and I keep pressing it too...it is deep inside....this gives me hope that it will go away! It is annoying but not particularly painful, at least not compared to what I have already been through.


Confirmed by endoscopy and blood tests October 2007

Donna

Share this post


Link to post
Share on other sites

Join eNewsletter

Guest swezzan

i feel like I have never felt before in my entire life. I am over 50 now.

Actually, physically I am doing so much better except when I get hidden gluten and it sits me on my butt.

The problem I have now is that my body is repairing itself, not to say I will ever be able to eat gluten but it is functioning better. I guess it is getting the nutrients it needs. I have also included a liquid food supplement to aid the process....it bypasses the stomach and goes into the blood stream....it has been three years for the supplement and maybe 1 1/2 eating gluten free.

My mental awareness is another thing tho. I never realized it but I must have had a limit of what my mind would aborb as far as inputted stimuli as I am having a hard time accomodating multi tasking with too much new info coming in at one time.; it is almost like part of my mind shuts down for its own protection when there is a flood of info........it will take what it can and then shuts off the intake till I have assimulated what I have learnt........and then the process starts all over again. It feels like flexing a muscle that has been dormant too long.

I am getting more aware and starting to accept more stimuliation and at one time..

I can understand some what why it is linked to autism and the like.............but isn't it a shame it will take the doctors years to give credence to this trend of thought. I am living it. Please visit my blog and you will be able to see how low I had been.

It is definitely worth the trouble not to eat gluten; however I don't think society is all that willing to help us out in doing so.

Image if most of the population in the US and Europe is gluten intolerant. Gluten is hidden in most of our food stuffs. Also, it effects us physically and mentally.....it could be one of the roots of our modern society illnesses. After all our US doctors seem to treat symptoms rather than the true cause of illnesses. Our economy base would be in trouble. Healthcare is a very large part of our economy and if everyone gets better........and it is only a diet change; the doctors, drug stores, drug companies etc would lose a lot of business. Jobs would be lost. Interesting thought. No/??

Share this post


Link to post
Share on other sites

Join eNewsletter

Yes, I felt immediately better. I am not sure you are aware, but there are seasonings that also have wheat in them. Also, some cereals maybe wheat free but not gluten free. I can not have either or I have an problem within 15 to 30 minutes. That 15 to 30 minutes is also my gage for food problems.

My husband has a lactose problem and some of the discriptions seem to be much of what he experiences when he has milk products.

When I first found out about Celiac I cut everything out and added very very very safe foods. The biggest thing that was and still is difficult is if the product has too many ingredients, I get gun shy and just figure it is not worth it. So many of the ingredients I can find out exactly what they are and they can have hidden time bombs.

Hope this helps - it truly is very challenging when you go to peoples homes or go out to eat - people sometimes just don't get it.

Ann

Share this post


Link to post
Share on other sites

Join eNewsletter



Join eNewsletter