Share Your Stories, And Journey With Recovery

[lemonade]

I am interested to know your stories about celiac disease and about your recovery....No response is too detailed. Feel free to vent.

Lemonade

[gabby]

Are you a reporter? Do you have celiac disease or know someone who does? Your question sounds very strange and makes me wonder about your intentions. Anyone who knows anything about celiac disease knows that there are no recovery stories. One does not recover from Celiac. Much like one does not recover from multiple sclerosis, or muscular dystrophy, etc. You can ease the symptoms, and follow a special diet/lifestyle, but it does not make the disease go away.

[lemonade]

No I am not a reporter. Im just someone who is new to Celiac and wanting to hear from others, going through the horrible time I am going through.

Lemonade

[Jenn2005]

Hi. I'm assuming your new to Celiac and wondering how long until you will be feeling better and hoping to find some comfort in others stories so I'll share mine (which is actually my husbands). He has been sick since last June. Now that we think back though we realized that he was very tired and having a lot of his symptoms (just not as obvious or as constant) for probably several years. He had meningitis about 4 years ago and never really got back to 100% and we are thinking that may have been his trigger. He has been on the gluten free diet since the begining of September (his dx was delayed because the GI dr at that time missed the dx on the pathology report - it was a new GI dr that found it and verified it with the pathologist in September). He had to do a gluten challenge after about 8 weeks gluten free and now he has been gluten free since then. He is doing much better but still has as many bad days as good days. But the good days are getting more frequent and are quite a relief. Many of his symptoms have subsided altogether but there are still several that he deals with daily. He has lost about 55 pounds since July 2005 and he is now getting Vitamin B12 injections monthly. At his last visit to the doctor we were happy because he had not lost any weight since his previous visit (2 months prior). He hadn't gained any but you have to start somewhere. Then they called and said his liver enzymes were elevated so we have to go back in 6 weeks to have them rechecked and see from there what other test if any need to be done. It does seem at times just when you think everything is getting better is turns around on you. I try to remind myself that there is always someone, somewhere who is in worse shape and that we should be happy that he has made so much progress. This is a long road and its going to take a lot of time to get better. Good luck with your healing process. Hope you get lots of replies that show you the light at the end of the tunnel, unfortunately my husband is still new to Celiac also so his story doesn't help you much.

Jennifer

[danikali]

This is a really realllllllllllly good thread. Please, those of you that have known that you are gluten intolerant for a while now, please share for those of us that are desperatly seeking comfort in someone else's reassuring story. Thank you for sharing you and your Husband's story, Jennifer. It scared me when I read Gabby's response because it made me think that I can never really feel healthy again.

Any other positive stories?

[lemonade]

Thankyou for the responses, and thinking that this thread is a good idea! I thought so too! Please cotninue to share your stories....its always helpful for those struggling...

Lemonade

[maxcarr]

I was diagnosed about two years ago, fairy asymptomatic, just not feeling great, then some of the intestinal issues began, but sporadic. I was very fortunate that my doctor tested me for celiac, without me even knowing, since I never would have linked it to food. Had the biopsy, etc. Had very elevated blood levels, went gluten free and have been doing great. I've had maybe 10 'mistakes' - some worse than others, but compared to what I read here, I think I have it easy. I go out to eat alot, have three non-celiac kids and non-celiac husband, so the house is nowhere near gluten free, I just have to be reallllly careful. I just finished my first marathon in January, and feel great. So there is hope! I must stress however, that I was not nearly as sick as many of the other people on this site, I was extremely fortunate that my doc caught it fairly early on and I responded immediately to the diet. Good luck with getting started, sites like this are a huge help.

max

[Lollie]

I have not been gluten-free for long, about a month, but I can say it has made all the difference. Much like Max, I didn't have as much damage and I responded immidiately to the diet. I have had several mishaps, as there is gluten in nearly everthing..... But even so, it's great to be able to label what the problem is and go on. I had been sick for 10 years. I was diagnosed with ulcers, gastritus, eventual gall bladder disease (which was removed a year ago), yet I was still sick all the time. Over the years have lost 100+ pounds. I have had boughts of anarexia, because everything I eat made me sick. It was really bad. I eventually felt like I was just crazy and needed professional help. Now things seem alot better. I know I haven't been doing it long, but it has been such a positive experience in my health, I wouldn't even dream of going back on gluten.

-Lollie

[AmandaD]

Hi Lemonade - I was just diagnosed in September after a biopsy. I got really sick to my stomach and had weird soft stools after fourth of july weekend. it was so random, it was like one day fine, next day poop!!!! I went to the doc about 4 different times and then to a g.i. and they diagnosed me with moderate villi damage, my TTG was about 10.5. (I also have a great aunt who has Celiac, but I was still stunned Celiac was what I had). I've been doing decent on the diet...with a couple of slip-ups which cause me a few issues for a few days, but other than that I've found I'm just glad I know what the hell was going on!!

I'm sure it's going to take me a while to recover (I've had a ton of colds this winter!) but other than that...it's been fine. Email me if you'd like.. AmandaD

[gabby]

Hi,

Didn't mean to scare anyone with my last posting about never recovering from Celiac. I obviously didn't put my thoughts together in a very coherent way.

What I meant to say was that the underlying celiac disease never goes away. It is always there. Even if you are feeling better, you can never go back to consuming gluten. So you cannot recover from the disease. But you certainly make your symptoms better.

But having said all this, I should have included that while the disease won't go away, the physical problems associated with the disease can be alleviated immensely through a very large variety of means.

You can feel much much better. Will you ever feel 100% again? I can't answer for anyone else, but I know that I was able to regain about 75% of my health, and I am very okay with that. I'll keep striving for better, but am ok.

[jessica00]

Hi,

I consider myself on the road to recovery thanks to a great Dr. and clinical nitritionist-who are both celiacs. I have been sick for 1.5years and found out I had Celiac 4 months ago by a nurse practitioner. I thought I was headed for a hospital stay. I tried to manage my diet myself at first, but even though I was gluten-free, I did not feel the way I knew I should. I was put on an elimination diet and found out I have an intolerance to dairy, wine, and soy protien. (soy protien has a similar molecular make-up as the gluten protien) I am now starting to feel somewhat normal again, and after I rid myself of H. Pylori bacteria which I was tested positive for, my Dr. says my body will be able to repair the major damage that has been done. I have learned so much from this Dr. and I am so thankful I have found people that can help.

Jessica

[lonewolf]

I haven't officially been diagnosed with Celiac Disease, but am definitely gluten intolerant.

When I was growing up I was very healthy. Good thing, because I wasn't allowed to go to the doctor because of some strange religious beliefs of my parents. I had more cavities than I can remember (and wasn't allowed to have novocaine when they were filled) and off and on would have troubles with a "sensitive stomach". When I hit my mid-college years my stomach got really sensitive and I was diagnosed with colitis and IBS, told to eat a "low residue diet" and take antacids. After that I got mono, developed psoriasis and my stomach troubles got worse. I never lost much weight though - it was always the opposite. I played basketball all the way through college and became a PE teacher and basketball coach, so the stomach problems didn't slow me down too much. I bought Tums at Costco in giant tubs.

Fast forward to age 32, when my 3rd child was about 6 months old. I started to get extreme fatigue and joint pain, which developed into debilitating psoriatic arthritis. The prognosis was that I would be in and out of a wheel chair for life. I was told to take Methotrexate and Plaquinil. (2 horrible medications). I asked the doctor (2 actually) about changing my diet and was told, "Anyone who tells you that your diet affects how you feel is a quack." I went to a naturopath anyway, because I really didn't want to take those medications and had food allergy tests done (ELISA panel from Great Smokies). I reacted to over half the foods, with the highest being to wheat/gluten, dairy, eggs, soy, peanuts and several types of beans. For a year I lived on fish, rice, sunflower seeds, most vegetables and fruit. I had never heard of "gluten-free" before, but I'm sure I didn't ingest more than a crumb of gluten in that first year. I was so fanatical that I bordered on an eating disorder and lost over 50 pounds. BUT, I got better. After two years I was able to go back to teaching PE, play in a women's basketball league and started doing triathlons. Oh, and when I went back to the rheumatologist, he told me, "You'll be back here begging me for these medications. Any relief you THINK you're getting will not last."

I slowly starting trying to add foods back to my diet. I still avoided wheat, eggs, milk and soy, but didn't stick to gluten-free. My naturopath was sure that I would be able to add all these foods back. I knew I would never go back to wheat or milk, so I never tried adding those in, but I did start trying barley and oats in small amounts off and on. After a few years I thought I could handle spelt. After a while on that I started to develop joint pain again and then (this is a very condensed version that really spanned a couple of years) I was diagnosed with a kidney disease called Minimal Change Disease. I'm not sure if anyone could understand how frustrated I felt being hit with another huge disease. My naturopath wouldn't even try to help me, since she felt it was so out of her league. My regular MD and nephrologist wouldn't even consider that diet had anything to do with it. I had to take HUGE doses of prednisone to get the disease into remission. I gained a ton of weight (still can't get it all off). I discovered on my own that when I tried eating spelt, the kidney disease would start to relapse. So I figured it was gluten. I went gluten-free to the best of my knowledge and my kidneys did fine. I experimented a couple of times to "test" my theory and was convinced that gluten was the problem. I found this website when I was trying to find some gluten-free recipes for Thanksgiving last November and discovered the whole world of Celiac and Gluten Intolerance. I have learned a lot here and wish I would have found it 10 years ago! My kidney disease is still in remission - going on 2 years now. My nephrologist once told me that he had a patient who stayed in remission for a year once and that was the best he'd ever seen an adult do with this disease. I haven't even had to go see him for over a year. Most days I don't even think about my kidneys, since I believe I've found the answer to keeping healthy. I'm not totally without problems - sometimes I don't have the energy I would like to have, although I do keep up with 4 kids (we adopted one somewhere in there), teach PE part-time and coach middle school girls' basketball. I also still have the psoriasis, which upsets me, but overall I feel good.

Okay, so that was a mini novel. You said you wanted details!

[plac]

Old thread, but came up first in google search, so I'll contribute.  

 

My celiac symptoms appeared following a bacterial infection (MRSA) at age 50.  Digestive pain, bloating, gas, intestinal blockage/restrictions, "the runs", dark stools, bleeding, inflammation, headaches, vertigo, dizziness, depression, anxiety, restlessness, anger, and more.  Accidental ingestion often took me 3 days to break (antacids, alkaseltzer, baking soda, apple, pepcid/tagamet, vinegar, magnesia, etc...).  Pills and tablets containing "cellulose" (wheat product) is one that I had to learn the hard way.    

 

I'm now eating mainly a veggie diet with clean meats (no manufactured or prepared dishes).  I also take softgel vitamins (Schiff) along with fish oil.  No coffee creamers or sodas either [corn syrup = grain/grass seed family like wheat].  Gradually began reducing inflammation and symptoms.  Also improved kidney function (detox); where the water weight is gradually coming off.  

[psawyer]

This is indeed an old thread. Seven years old.

 

You seem to be confused about a couple of things:

 

Cellulose is safe, period.

 

Corn is not a source of gluten, although some people with celiac disease are also intolerant to corn as an independent issue. You may be one of them, but it is not a concern in general.