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Hope


skluever

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skluever Newbie

its hard to look forward when the only thing you've ever felt is pain. please let me know any success stories. what you had to do to get there. and how long it took you to feel normal. :ph34r:


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mindwiped Rookie

Mine is not a gluten success story, but I will share hope. DH is a celiac, and since January, I have been suffering long multi-day (12 and 14 day) migraines. My PCP sent me to a neurologist after the second one, knowing it was out of their league (hooray for an educated PCP) and the neurologist's first approach is two pronged, a preventative medication and a dietary change to see if an unknown milk allergy is aggravating the migraines. I went completely dairy free for 8 days, and challenge, per the neuro's advice, BAM, migraine day nine. I'm dairy free and mostly migraine free (crosses fingers), but even if this isn't the trigger, I feel so much better off dairy, I'm not going back on it, even if I could without the headaches.

DH started feeling better right away, even when I was still making stupid newbie mistakes (soy sauce etc), but when I went dairy free, he went extremely dairy lite, and it really seems to be good for him, so he may end up going gluten-free/df, just because his stomach and his head are both happier without dairy and gluten.

CeliacMom2008 Enthusiast

Oh I love this! I have so many reasons to see the silver lining here!

1) My son gained 4 pounds and grew 4 inches in one year of gluten-free living.

2) My son no longer has giant mood swings. He's extremely even tempered, mild tempered, happy, go lucky, loving, caring, funny, and the list goes on.

3) My son hasn't been on antibiotics since the fall before his diagnosis. Vs. pre-diagnosis when he was always sick with strep or pink eye or bronchitis or barking cough.

4) My son now runs up and down the soccer field and basketball court like other kids and complains when the coach takes him out of the game. Vs. pre-diagnosis when he always volunteered to sit out.

5) My son's grades are awesome and consistent. Vs. pre-diagnosis when he was mostly straight-As but would sometimes bring home papers where he didn't do many of the problems.

6) I have become a much better cook and my son is now a food snob. He expects only the best tasting, healthy food. Yes, a burden on me, but so funny to see his face when I need to give him something quick and it isn't up to his standards.

7) Our whole family (my parents included) has become much closer I think. And although we always ate dinner together every night it's different when it's not at a restaurant.

8) We now have summer BBQ night in the basement on a cold winter night or pizza and a movie night where we watch a movie and eat pizza off the awesome Mickey and Minnie triangle shaped pizza plates I got for Christmas. We find creative ways to make dinner fun and unique.

9) My son said to his GI doctor, "No it isn't." When the doctor said, "You're doing really well. I know the gluten free diet is really hard."

10) Our whole family is much more aware of the food we eat and eat a healthier balance of foods.

11) My son doesn't mind eating gluten-free one bit. He likes the food. He loves how he feels. He's HAPPY!!

Welda Johnson Newbie

Thank you CeliacMom2008 for those inspiring words! Reading your post uplifted me, and I was getting ready to tell how much better life is on a gluten free, dairy free diet too. When I read your message, I felt extremely hopeful, because so many of our young family members have Celiac and may not even realize it. Your son is proof that life does get better when we take good care of ourselves and each other.

I stay away from all grains, all milk and dairy, egg whites, yeast, maltodextrin, modified food starch, casein, whey, and msg and my life is so much different now. I've stopped most of my asthma medication, I sleep better, have more good energy, have fewer mood swings, and have been able to adopt a healthy lifestyle where I walk almost every day and maintain a proper weight for my height.

Life is so much better! This diet really works. Welda

The Kids Folks Apprentice

Just had to share ours with you too! We decided to try going gluten-free for our DS (age 7) October 08. Since this was a lifestyle change, I wanted to do it with him so that he wasn't in this all alone. DS had a negative blood test and we decided against the biopsy at this point. (we'll of course get if it there is a change - meaning that something else is going on) any way I digress.

I had been having MAJOR issues with mood swings, IBS, migraines, and insomnia - doctors pretty much told me that I was in perimenopause - Yippee I'm only 45! So how many years do I get to feel like this I asked? The doctor response - "well we can rx for this and that..." No thank you I told them, hoping that some day I would wake up and feel better.

Well, guess what? That day happened when I went gluten free with my kiddo. I now sleep every night and wake like I've been on vacation, you know that really really solid restful sleep! IBS - gone! Mood swings much to my families joy, the mood swings are gone. migraines - almost gone, still working through those although they have greatly reduced in both number and severity!

I kicker to all of this is I really never realized how awful I really felt until I started feeling good, no not good great!! Oh, and the best part is that I have finally lost that baby weight around my middle - never mind that DD is almost 5yrs!

Our whole house is now gluten free and we wouldn't change a thing! We eat healthy meals, we cook and BAKE, we've now become the "cool" house who's mom bakes cookies all the time!!

Oh, DS is doing wonderfully - he has gained weight and is growing - although we haven't measured either lately. He has gone up a size in pants and shirts!! Woo Hoo. He has also stopped having any of the gas, bloating and chronic C. He is also now our huggy kid - he said b/c his body doesn't HURT any more!!

Today is our 5 month anniversary! I asked him if he every wanted to go back to wheat and gluten, he looked at me, smiled and gave me a big hug, and said "No, I like being healthy now! Thanks Mom!" :D

The Kids Folks

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    • Russ H
      What you describe is seronegative villous atrophy (negative antibody tests but positive biopsy). It is uncommon in coeliac disease, and there are other causes, but the most common cause is coeliac disease. I would pursue this with your healthcare provider if possible. Based on clinical history, test results and possible genetic testing for susceptibility to coeliac disease it should be possible to give a diagnosis. There is a bit more here: Seronegative coeliac disease
    • Scott Adams
      If you are still eating gluten you could get a celiac disease blood panel done, but I agree with @trents and the gold standard for diagnosing celiac disease would be your endoscopy results. Is it possible they did do a celiac disease panel before your biopsy? This would be the normal chain of events. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • trents
      Actually, it would be more correct to say that the genetic potential to develop celiac disease is passed down from parents to children. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% of the general population actually do. But it is also true that the offspring of those who do have active celiac disease are at a considerably higher risk of developing active celiac disease than those of parents who have the genes but don't develop the disease. Some recent, larger studies put the risk at near 50% for the first degree relatives of those who have active celiac disease.
    • Jordan Carlson
      Hello everyone! Been a while since I posted. The past few moths have been the best by for recovery for myself. I have been the least bloated I have ever been, my constant throat clearing is almost gone, I have stopped almost all medication I was prevously taking (was taking vyvanse for adhd, pristiq for anxiety,fomotadine/blexten for histamine blockers and singulair). Only thing I take now is Tecta. I also no longer get any rashes after eating. Things are going very well. Most success came actually once I upped my B12 daily dose to 5,000 mcg. I do have one thing I am un able to figure out and want to see if anyone else has this issue or has experience working around it. Ever since I was born I have always had a issue getting fruits and veggies down. No matter how hard I tried, it would always result in gagging or throwing up. Always just thought I was a picky eater. Now that my stomach and system has healed enough that I can feel when something is off almost istantly, I notice that after eating most fruits (sometimes I am ok with bananas) and veggies, my stomach instantly starts burning and my heart starts to pound and I get really anxious as if my body doesnt know what to do with what just enetered it. So I am thinking now that this is what probably was going on when I was born and my body started rejecting it before which caused this weird sensory issue with it causing the gagging. Hoping someone has some exprience with this as well because I would love to be able to enjoy a nice fruit smoothie once in a while haha. Thanks everyone!
    • wellthatsfun
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