Does Anyone Feel Better?

[SteveW]

Hi

I need some success stories!

I've been gluten-free (to the best of my knowledge) for 4 months and I've only made very minor improvements if any at all. I have zero energy, I'm depressed, I seem to react to just about everything, and I'm still losing weight. I feel like I'm fading out...

As strange as it sounds I was glad I found out that I have celiac disease-well not glad about celiac disease but glad that I could control it with diet. Not a big deal I'm very disciplined and I'll eat what I need to eat and get on with my life. It just doesn't seem to be happening. Shouldn't I see some improvement by now? Every time I think I'm getting better I get hit and I'm right back where I started.

I'm running out of foods to eliminate!

When I had my colonoscopy my Doc said there was a patch that could be Crohns.Maybe I'm dealing with that too.

I don't know. It

[GFdoc]

Hi - you want a success story...here's mine: At the age of 40 I've had chronic arthritis (sacroiliac joint) for 15+ years and severe acid reflux (I was on 2 prescription drugs)...Six months ago I found out I have celiac disease and went strict gluten-free. My arthritis hasn't flared AT ALL (except one minor twinge...and I thought I had eated gluten by mistake) and as of today, I'm off all acid reflux drugs!! I'm thrilled, I'm comfortable with the diet (I like to cook and experiment with recipes) and I'm feeling great! Only occasional sad feelings for foods I can't have..but that usually just sends me to the kitchen to try out new recipes. Plus, hopefully I've headed off the osteoporosis that I was close to having (I'm osteopenic, one step below osteoporosis).

Hang in there...make sure you don't have any hidden glutens... and make sure you don't have other additional problems (ie Crohns). Maybe your intestinal damage was more severe and will take a few more months to heal..

Good luck...Sara

[Dwight Senne]

SteveW, hopefully, your GI doc is following your progress closely. I don't mean to scare you, but there is an increased risk of small bowel lymphoma. Having said that, I will relay my story.

It is a similar story to yours. I have been gluten-free nearly one year. I still have ups and downs, both physically and emotionally. My doctor was very concerned at first because I was not gaining weight. He finally ordered several tests to eliminate the lymphoma - which he did eliminate. Whew! Today, I am slowly gaining weight. However, I still am struggling with diarrhea. I am currently taking Colestid which helps greatly. However, every time I try to get off it, the diarreah comes back. Sometimes the next day, sometimes a month later.

I am very confident that I am maintaining a gluten-free lifestyle, however, one cannot always be sure of cross-contamination issues from the food manufacturers. Is it possible this is what is affecting each of us? I suppose it's possible, but who knows for sure?

Even with my current problems, I am miles above where I was prior to my Celiac diagnosis. That did not happen overnight, though. Give it time, but at the same time, make sure your doctor is aware of your problems.

Best wishes,

Dewey

Marion, IA

[YankeeDB]

SteveW, I'm glad you posted this as I feel the same way. I've been gluten-free for 6 weeks or so and while I have good days, I'm still not feeling as energetic as I believe I should. I'm currently combing through my diet to see (again) what else I might be reacting to (eggs? corn? yeast? milk products are already out) I've been keeping a food diary along with ratings of my energy level, bm's, sleep, and food pain.

I think, too, the thing to keep in mind that in can take a long time to get better, especially if there was extensive damage.

It's definitely an adjustment process, but WE SHALL OVERCOME!

[Guest shar4]

Hey Steve!!

You wanted some success? Ok. I can do that. I guess my story is not as dramatic as some,but I did have some issues. I have been anemic, ever since I can remember, being a woman of course, this was blamed on the monthly cycle, and NOTHING was ever done about it. I had known for a loooong time that something was wrong with me, but nobody could figure it out. I went to my Dr last January (2003) and had some questions, at which point, I nearly got my head bitten off, and was told that he had no time for questions, the HMO's only gave him 10 minutes per patient. I left in tears, and never went back. I was reaching the end of my rope.

I talked to my friends at work and was recommended to another Doctor. It took several months, but it was most definately worth the wait. I have never had a doctor spend as much time as this on did with me. After she had answered ALL my questions she reached to shake my hand before leaving. She looked at the palm of my hand and then looked me in my eye and said to me that there is something wrong with me, my palm was very pale. (I thought she had lost her mind)

Long story short, I had all the testing, including biopsy, and I have celiac disease. Since going gluten-free on Halloween, there has been a dramatic change for the BETTER!! However, it was not until I started taking B12 injections that I noticed the big difference. I have so much energy that I am driving myself crazy most of the time, and I am no longer depressed the way that I was, the blood work is improving, albeit more slowly than I would like, and I am sleeping like a baby. Life is very, very GOOD.

I have had a couple of recent accidents that knocked me on my bottom, I haven't been that sick in years.... But the good news is that the weight gain seems to have stopped.

Sorry to be so long winded, but there is soooo much that I am grateful for. My husband hasn't left me, I have a decent job, and I truly have wonderful children, even though they think I may have lost my mind. (I am seeing things at home that need to be done, that haven't been done in a long time.) AND I don't have cancer.

Just to know that there is a reason for feeling the way that I did, gives me validation. I am still healing, and still taking Iron and B12, but that is a small price to pay to feel this good.

I hope things improve for you and everyone here knows how difficult this can be.

Blessings.

[celiacfreeman]

Shar b

Sound like we are just alike symptop wise.

gluten-free free for 9 weeks my iron count was coming up to almost 12 so my dcotor

took me off iron to get my calcuim up. Bone scan was rpetty bad for a 43 year old who has been doing step aerobic for 8 years. ANyway, as soon as I go off the iron I get incredibily thirsty. Doens't matter how much water I drink. Let me know if this happens to you? So I'm taking 180mg of iron instead of the 325 mg I was taking. I need to get 1500- to 2000 mg of calcium a day and that is pretty tough to do. DId you get the bone scan, if not demand it. My doctor didn't know about doing one but I had read it out on this site.

B 12 1000 percent usda i have been taking for 10 years. It helped with my extreme pms. I think i will continue to take it. The last two month I have not been aggitated like I normally would even with all the b12. I am blessed to have found out the cause and so I am very happy to not have cancer too since i knew somthing was not right since hainvg phnomnia in 1995.

Gained 10 poumds in 9 weeks. Just about the right size, hope this wieght gain stops soon.

[YankeeDB]

Celiacfreeman, I wonder if the extreme thirst might be associated with a blood sugar problem? That could explain the weight gain. I know celiac disease is linked to diabetes. Might be worth looking into. Good luck!

Shar4, THANK YOU for your story! It made my day.

For myself, I've been gluten-free (more or less) since the end of January with mixed success. However, after keeping a food diary I am eliminating ALL dairy items, including whey, and think this is showing promise.

I think the need for time and healing along with other food sensitivities underlie problems with recovery in the early weeks/months of going gluten-free.

In general I'm eating healthier than ever and enjoying learning about how to make nutritious food taste good. Slow and steady wins the race!

[Guest shar4]

Celiacfreeman,

I have bone density scan every year, since I have already been diagnosed with osteoporosis. It had actually showed marginal improvement. Looking back, all the signs were there, no one was smart enough to figure out what was going on. The only reason the Dr consented to doing it initially was because my mother and sister both have osteoporosis.

I do the best I can with the calcium supplements, sometimes they give me a tummy bummer if I'm not careful. I'm also taking Fosamax to help stop the bone loss.

I was only 42, I think, when I was diagnosed, so we really are similar, aren't we.

Anyway, blessings to all, and email me if you like.

[SteveW]

Glad to hear some success stories

I just went to see my GI and he's testing me for B12 because I

[Laura]

Count me as a success story. Going gluten-free was like trading in a Honda Civic with 90,000 miles on it for a brand-new Accord. I felt so much better in so many ways that I was surprised when I realized it hadn't cured the ligament damage in my ankle or my fear of heights.

[hapi2bgf]

SteveW,

I was diagnosed in Oct 2003. I had blood work stating malnurishment, anemia, etc. I have seen a huge change in my life since then. Friends and family comment on how skinny I was and how I look so much better now. I have color again - premanently anemic and now it is fixed. I was too exhausted to ride my bike more than 10 minutes before. I have given up riding my bike until the weather gets nice, but I have tons of energy now. I found a multi-vitamin with energy and it is a huge help (I think it is from Nature's Path?).

I have seen other people say it can take 2 years to see a full recovery, but I feel so much better already. maybe your body just needs some more time to heal?

[VAGuy]

Hello SteveW

There should be two posts coming up in the Pre-diagnosis forum (I just wrote them and I think they are previewed prior to being listed) that you might want to look at.

In short - the list of things to avoid for a while includes nuts, and you mentioned Almonds.

I've been blundering around for 3 months now and am finally getting a grip on things; 4 of 5 last days have been "good," the other was when I got into the Cheese Curls (fat) and only 8 of them, between meals yesterday. Fats, sugars (if it's got "ose" at the end thats what I mean), and fiber are my big problems.