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How Long Have You Been Gf And How Do You Feel?


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#1 Guest_LisaB_*

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Posted 01 January 2004 - 10:28 AM

Just thought it might be nice to see everyones progress, so if you could state how long you have been gluten free and the improvements you have seen or how you are currently feeling, that would be great! :D

Thanks in advance for your input!

Lisa
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#2 Lynskyj

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Posted 01 January 2004 - 01:03 PM

:) Hi Lisa,
I have been gluten-free since April 2002 and Dx May 2002. It was slow going, b/c my iron stores (ferritin levels) were almost non existent. It took about a year or so to get my energy levels up. But when they did come up, along with my bloodwork, I felt better than I had in 10 years :lol:
I was Dx with a wheat allergy as an infant that they thought I outgrew. I was miserable on and off for years with what we now know is DH and anemia. Finally in Dec 2001, I got really bad. Initially was Dx with cancer. After months of various docs and no help, a GI doc told me about sprue and I should go online to find out more. I found Dr. Green (thank GOD!).
It isn't easy eating out (previously a fav past time), but I wouldn't trade how I feel now for anything. I'm still careful with nutrition and rest. I started to see progress after 2 wks of gluten-free (the DH calmed down). In about 3 months, all blood work was creeping up!
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#3 eileeno

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Posted 01 January 2004 - 01:51 PM

:( Hi Everyone, I'm new here! I actually do not have Celiac Disease, I had both the blood test and biopsy, but I must be gluten intolerant or allergic. I diagnosed myself almost two years ago after switching from low carb eating to Weight Watchers, I started having bad symptoms that I narrowed down to eating wheat. Symptoms were mostly intestinal (bloating and gas) but after giving up wheat I felt better in a lot of ways. Problem is, I cheat a lot, especially during the holidays. I can't seem to find the willpower to stick with it. I need to lose quite a bit of weight too. Any words of wisdom? Also, my gastroenterologist said to just keep wheat to a minimum, I know thats not good advice. I suspect I have other food allergies, mainly tomatoes and onions. I don't know who I should see next, allergy doctor, nutritionist, or if I should just continue on my own doing what my body tells me to do.
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#4 wclemens

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Posted 01 January 2004 - 05:31 PM

I've suffered with symptoms of celiac since the age of 8, and now I'm 59. It took years of dealing with specialists, with allergists, with Asthma doctors, etc. to finally realize that they didn't know what to do either.

After getting tired of the persistent wheezing, Asthma attacks, depression, mood swings, irritability, ulcers, and hospitalizations, I began to fast, avoiding food altogether at times, since that seemed to be the only way I could survive and even begin to feel alive. I would begin to breathe well, then would have to eat and would be wheezing and feeling lousy again.

It began to dawn on me that certain foods made me feel worse, especially wheat and milk products. When I stayed away from them I felt better. It was only two years ago that I learned that I have celiac, and what a relief it is to have a name for this disease.

I've had many downfalls in my efforts to be gluten free, milk and dairy free, and egg white and yeast free (I've learned I'm allergic to these as well), but now that I feel so great, I wouldn't cheat for anything. There is no way that anyone else can sway me when it comes to sticking to this diet--it is a matter of life and death (my father died of colon cancer, and there is speculation that celiac may be a predisposing factor in some cancers).

About ten years ago I discovered The Carbohydrate Addict's Diet, devised by Drs. Richard and Rachel Heller, and now, after struggling with weight most of my life, I
weigh 108 at five feet tall. Anytime during 23 hours of the day I can eat protein and low carb vegetables, and one hour each day I can eat or drink anything I can tolerate. I have so much energy and stamina it is incredible.

I am happy to be on this path of recovery--it took awhile to realize what was happening, but now I take control of my diet each step of the way. Good luck to those of you just learning what your bodies can tolerate--it is so rewarding to learn that we have the healing power within ourselves, and that our bodies will give us the signals we need in order to heal. Welda
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#5 Guest_PastorDave_*

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Posted 01 January 2004 - 06:47 PM

Hi there.

I am one of the fortunate few who was diagnosed early on. My mother went through all of the worst symptoms, and misdiagnosis, and finally was told she had Celiac. She told me to be tested as it is hereditary, and it was caught in early stage (microscopic). I am glad that my Mom has been on the gluten-free diet for a year now, as she can help me and my wife with what to cook, and what to eat. I have been gluten-free for about two months now. The funny thing is that I can notice a difference in my eating habits, and my energy level. I have a better appitite (not always feeling sick to my stomach) and have more energy. :lol:
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#6 seeking_wholeness

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Posted 01 January 2004 - 07:34 PM

Hi, Lisa!

I've displayed clusters of the more obscure celiac disease symptoms for pretty much my entire life: canker sores and frequent infections (I got mono when I was three!); gingivitis, cavities, and nocturnal bone pain; acne, migraines, and endometriosis; severe depression, anxiety, and chronic fatigue syndrome; lifelong problems with a furred tongue and periodic vertigo; and finally, after I went wheat-free for my breastfeeding baby's sake, cramps and unique-smelling diarrhea when I ate barley (or rice that I cooked afterward in the same pan!). I have had all kinds of episodes of pain or other symptoms doctors could not explain that, in retrospect, I am sure were acute exacerbations of celiac disease.

I suspected celiac disease only when my second child developed foul-smelling, bulky stools after I began giving him rye crackers to teethe on. His older brother had had EXACTLY the same symptoms but hadn't been wheat-free, so his pediatrician had blamed fruit juice. Our new pediatrician explained (when I asked) that she would not suspect celiac disease in their cases because they are very tall (80th-95th percentiles) and hitting all their milestones--but when I explained my symptoms and reported that I had had a non-zero salivary anti-gliadin antibody test (performed as part of a chronic fatigue syndrome panel) even after months of consuming virtually no wheat products, her eyes got wide and she started talking about false-negatives and family history and maybe getting both boys tested for celiac disease!

Unfortunately, conventional testing would be a difficult option to pursue, partly because we have no health insurance right now but also because I am not yet healthy enough to cope with putting the boys through a gluten challenge! Their behavior deteriorates incredibly fast when we have an accident. Besides, I am philosophically opposed to deliberately mutilating my children's bodies just so doctors can ignore the evidence that is right there in front of them in favor of performing some unreliable but lucrative tests! And doing a gluten challenge myself is entirely out of the question since I very quickly become borderline suicidal with repeated exposure to gluten. Later this month I will order stool and/or gene tests for us all (even my husband) from Enterolab to confirm what I already know (or suspect in my husband's case).

Anyway, I know you asked about our experiences with being gluten-free, but since I only went totally gluten-free a couple of months ago I figured I would just lay out my background with celiac disease. I have been wheat-free for about a year, though, and even that much has produced noticeable improvement in my emotional stability and sense of worth and well-being. Now I am in the hardest part of the gluten-free learning curve--NOT beating myself up when an accident happens! I get so frustrated, though, because I LIKE having a clear complexion (well, almost) for the first time since I was a child, and I like not feeling (quite so) bloated after every time I eat, and I know my family and friends REALLY like not having to walk on eggshells around me all the time in fear of setting off a bout of sobbing self-denigration!

I've been wondering about the seemingly slow pace of improvement in myself and especially in my children, but then I remind myself that it really has been only two months or so and we have had several accidents (which is only to be expected this early in the game), so I guess it is too soon to get frustrated! I am terribly jealous, though, of everyone who reports feeling sooooo much better in just a couple of weeks! Why can't I? After all, my symptoms are so "mild" that my mother thinks I'm "creating" them by "believing" that gluten will harm me! Thank heavens I HAVE healed enough to be emotionally capable of dealing with her reaction, even though it is unhelpful and unkind!

Above all, I am eagerly looking forward to meeting the "real" ME, instead of the subdued shadow I have been all these years!

--Sarah

P.S. Eileen, you MAY still have celiac disease, no matter what the blood tests and biopsy indicated. Both sorts of tests are subject to human interpretation and human error. In addition, the blood tests can come back false-negative if you have IgA deficiency (an immune system problem that is more common in celiacs), and the biopsy can come back false-negative if the inflammation in your intestines is only patchy--the doctor may miss it completely when collecting specimens since it is not usually visible to the naked eye! You may want to consider visiting the website I mentioned above, Enterolab, and possibly order a test or panel of tests for yourself to confirm or disprove what your doctor has told you. It is quite common for celiacs to have secondary food sensitivities, and some of these will go away as the body heals the damage wrought by gluten. I hope you decide to pursue the matter, for your own peace of mind if nothing else! Best of luck to you!
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Sarah
gluten-free since November 1, 2003

#7 Alison

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Posted 01 January 2004 - 09:18 PM

Hi everyone.
I celebrated a year gluten-free on December 27! I feel so amazing and am still noticing changes in my health. I had a lot of stuff going on before and never realized they were all connected, nor that they were even symptoms at all. Here are some of the things that I DON'T have anymore after being gluten-free:
-- asthma (I was on medication since I was little)
-- anemia (doctors even did a bone marrow exam, but still couldn't figure it out)
-- gas and bloating, generally uncomfortable feeling all the time (but thought this was normal)
-- abdominal pain sometimes
-- burping a lot
-- diarrhea at times, which I believed were the results of a lactose intolerance or rich food or “something I ate”
-- nausea at night sometimes and restlessness
-- severe muscle cramps that occurred usually at night or while playing sports
-- pain in my legs – an aching that I couldn’t even put into words, felt like it was inside my bones
-- feeling sleepy – sometimes I would feel like falling asleep in the middle of the afternoon
-- feeling out of breath – for example, after walking up a flight of stairs (even though I could go run 5 miles)
-- ice cravings (this is associated with low iron)
-- being cold all the time (low iron)
-- being dehydrated – I was very thirsty a lot and had very dry skin
-- anxiety
-- mood swings
-- peeling nails

There are actually more symptoms that I had, but this is probably enough to share!! It sounds like I was a wreck, but I was a pretty "normal" person despite it all! :P I still am in awe that all of these problems have completely disappeared (unless I accidentally ingest gluten). I don't take any medications at all, not even for asthma.
I hope others can relate to my list and get better too.
Happy New Year and thanks to celiac.com for all the great info!
Alison
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Alison
- Diagnosed celiac 2002
- Husband is gluten sensitive
- Daughters are gluten-free and one daughter has severe food allergies

#8 hapi2bgf

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Posted 02 January 2004 - 06:17 AM

I have had a variety of symptoms since I was a baby, but was healthy enough to never question celiac disease as being the problem. The real problems started for me around my first pregnancy. I gained enough weight, but I was all belly. I never gained the extra pregnancy weight even though I ate everything in sight. I lost all of the pregnancy weight and an additional 20 lbs or so within 2 months of delivery. I have pictures that look like I must have adopted the baby because I was so thin. The weight just kept coming off and the doctors said this was normal, all in my head, or just prescribed prozac and things so I would stop bothering them. After numerous doctors I finally found one who listened and had thoughts about what was really going on in my body. Almost a year later I was finally diagnosed with celiac disease (Oct 2003). I'm happy that I have a doctor for life who I can trust. My gallbladder is gone, my stomach is functioning, I'm off most of my medications, and I have gained weight. Overall this has been a great year. (My daughter was blood tested twice for celiac disease and is negative - at least for now.)
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#9 tammy

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Posted 02 January 2004 - 06:37 AM

Hi Lisa,

I have been gluten-free for a year. I feel pretty good. My biggest problem is flatulence after meals and a tiny wheeze with accidental ingestion of gluten or too much dairy. :( Do you need to take any supplements for possible malabsorption? (Perhaps folic-acid or calcium)

I hope this helps...

Tammy
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#10 Guest_aramgard_*

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Posted 02 January 2004 - 08:25 AM

I have been gluten free for 3 years and am just beginning to adjust. The gluten free was easy. But after 50 years of misdiagnosis, I had many-many problems to overcome. My immune system is taking a long time to recuperate. My intestinal tract felt better in about six months. But the vertigo, soft nails, multiple allergies, bacterial & viral infections, plus osteoporosis, peripheral neuropathy, etc. are taking a lot longer to resolve and some may never resolve. You who are diagnosed at a young age are very lucky to have gotten a definitive diagnosis. You all have a chance to heal properly, just be very patient. Shirley whitley
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#11 mannabbe

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Posted 02 January 2004 - 11:39 AM

Shirley, it's hard to believe we are reaching our 3 year anniversary already! Like Shirely, I am still "in recovery." One year after going gluten free I felt better than I'd ever felt in my life (and I still do) - but I've problems with recurrent clostridium difficile infections (caused by antiobiotic use when I had pneumonia, before I was diagnosed with celiac). I also have mutiple food allergies because I wasn't diagnosed until I was 40. I still am unable to eat ANY dairy (even butter) because of a profound casein sensitivity. I also have to avoid all corn, soy and some nuts. I did NOT feel better the first 3-4 months because I hadn't identified the dairy / soy / corn problems. After I figured those out (through an elimination diet and ELISA blood testing) I started feeling better.
Happy Anniversary Shirley! ;)
Laurie
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#12 MySuicidalTurtle

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Posted 02 January 2004 - 11:54 AM

Hello, I am new here. . .I found out I had celiac disease about 9 months ago. I had symptoms from as far back as kindergarten. When we finally went to a doctor they always said IBS which my mother has but the symptoms were not exactly the same. The years past and by the time of my senior year I was getting sick everyday with terrible diarrhea. I had moved to a new state and had a new doctor as soon as I told her about my problems she knew it was an allergy to food and tested me. From the day we got the results back I have been wheat free. There have been a hand full of times where I ate wheat without knowing it and got really sick but I am still learning. It is still hard for me when I go out to eat. I get so scared of getting sick. I will just not eat than risk the chance. When I go on vaction I take my own food which lets me eat. The only bad thing that has happened to me as result of being wheat free is that I have an anxiety problem. I was sick everyday and now I am not and I have the fear of getting sick anytime I go anywhere. I had stopped going out with people or even to the store. I would stress at college in my classes. My docotor recomended a therapist and I take some anto-anxiety pills which help a lot. I now do better and go out. I am always learning new things each day. Well, that is my story.


Kristina
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#13 lucycampell55

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Posted 02 January 2004 - 01:06 PM

Hello everyone. I'm new here also and new to celiac disease.

I was diagnosed with celiac disease quite by accident on November 2nd of 03. It was the most wonderful day of my life next to my wedding and the birth of my two children. ;) For the last 10 years I have felt that I was falling apart and had no idea why. Now after being gluten-free since the diagnosis, I feel like a new woman. I have lost 15 lbs after gaining over 80 over the last 3 years. I was suffering from depression and anxiety. I was to the point that I couldn't leave the house unless it was a major necessity. My husband and children all thought I was crazy and to tell you the truth I thought so too. I couldn't explain it and neither could anyone else. I would never have imagined that it was caused by what I was eating.

Back in August I hurt my knee and when I went to have it checked out this wonderful new dr. to our area started asking a lot of questions about my health. I just turned 52 on Nov the second and he wondered if I was having any pre-menopausal problems. I told him about everything that was going on and he decided to run some tests to see if it would be possible to go on HRT. Since there was history of cancer, diabetes and heart disease in my family he decided to do a colonoscopy to make sure I was okay. He sent me to the Gastroentrologist and he asked further questions, like have you had any problem with indegestion or heartburn and I told him that I had been having problems with just about everything I ate anymore so he decided to do the Endoscopy as well. I would gladly go thorugh both of them again to get the same results. Now don't get me wrong, I'm not glad I have celiac disease. I'm just glad they know what I have. In just the short amount of time that I have been gluten-free, I am a totally different person. I can be with my family and not be on edge the whole time, I can go out in a crowd and not feel like I was being smothered. In fact my husband and I just got back from a wonderful christain concert in NC where we brought the new year in with over 20,000 people. I'm still having a hard time dealing with eating in restaurants and I do get a little frustrated with being unable to find the things to cook with. The only place that carries any gluten-free products is the local Food City, and that's just rice flour. I live in a little town in southeastern KY and no one here has ever heard of gluten-free products. :( I guess that's why I was so surprised and thankful that a dr. actually found out what was wrong. My family dr. who we have been seeing since 1975 couldn't find anything.

I'm so glad I found this site, because all that I have learned about celiac disease has come from celiac.com Even the dietician I see had to go online to find out what celiac disease was.
I'm also glad that I was invited to join this group. I couldn't find anyone who could talk to me about celiac disease and the things that I am going through. Thank you all for letting me know that I'm not alone with celiac disease.

Lucy from KY
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#14 Guest_LisaB_*

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Posted 02 January 2004 - 01:07 PM

Wow! Thanks everybody, and hello back to everyone, keep 'em comin'!

Tammy,

I would say that I think digestive enzymes (I use plant enzymes) would be a good thing for you, I won't recommend a brand because I haven't done my research yet. We had a good little discussion on this subject on the thread started by Lily, I think it was entitled "I Know What Is Wrong, When Will I Feel Better" or something to that effect. She has just gone to a nutritionist that recommended some supplements and posted them there. I personally think the supplement for leaky gut sounds like something to try. I also mentioned somethings I have read that may help you, if your still having problems I think you really have to look deeper and see why your having that gas and so on. Welda always makes good points about other foods that may be bothering some of us that haven't obtained total relief, I think it is important to remember it can be other things your not doing well with as well, at least during the healing process. And speaking of supplements....

Kristina, have you ever gotten any good B vitamins into you? There was a study in one of the articles I read about Celiac patients still suffering from anxiety/depression after a time of being gluten-free and then they put them on Bs and it improved for many....I'll have to look that up, it was in the archives on this site.

It is so nice to read everyones experiences, I know many of you have posted a lot of this info before, but for all those that are finding this site this is great. Thank you...

Lisa
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#15 Daywyn

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Posted 02 January 2004 - 01:48 PM

Hello Everyone and Happy New Year to all

I am new here but not new to celiac disease. I was diagosed as a baby but it was thought I outgrew it. In fact I did not even know what it was.

I am 56 I do not have pain or bad sysmtoms, and am overwieght so doctors all say no way josa. <_< Your just getting old, you have to loose wieght, all the doctor-type anwsers, but not quite hitting the mark. ;)

What I do have is ashma, cronic diarrhea, diabetes, leg pain for no reason the list goes on .

So started to do my own research. Well we all know what I found.

My daughter suffers from all of this and depressioin, endometrious --hystorectomy at 27. :( And mood swings OMG. Now we are both trying to get well.

I am so glad I found this page. Not only have I validation for what I know to be true, there is great support here. :D

Thanks all
Daywyn
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