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Celiac Disease and Gluten-Free

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TOPIC:   Worse off than most 

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Posts: 76
4/30/07 2:25 P

HANAKO76's SparkPage
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I too love the razor blade analogy!! Crazy thing for me is that since I have been gluten free (2 1/2 years) I have worse reactions than what I did before! Madness! I am really sorry to hear about the doctors mistake. That is awful. On the upside, babies are so cute and we all soon forget the pain, sickness and sleepless nights when we are holding that little innocent creature in our arms. Take it easy, Hana


BEANSHIPPYMAUM's Photo Posts: 87
4/29/07 1:58 A

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The razor blade analogy is great!

A few days ago when I cheated after an accidental ingestion... that is exactly what it felt like. At first I was like ooooooo it's my gall bladder - but then it moved along to the other size - I felt it's trip through my digestive system inch by inch! SUCKY!

Interestingly my husband has GERD and his does not get better with medication - He takes medication daily and eats tums like they are candy. I am actually forcing him to the doctor's AND SITTING in with him to make sure when they ask how often he doesn't say a few times a month *pfft! NIGHTLY is more like it* - we have tried a lot but he didn't complain *as* much when he went GF for 2 months! He only had celiac type symptoms when he had accidental ingestion - or a small amount (like a bite of bread) but when he went back to eating gluten he was fine.


IDAHONURSE's Photo SparkPoints: (0)
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4/27/07 10:36 P

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Finally a topic I'm an authority on! I had not one, but TWO nissan fundoplication surgeries. Both failed. I nearly bled to death during the 2nd because my organs were all glued together w/adhesions and had to be separated. So both surgeries failed and I had to go back on prescription drugs for the intense and constant heart burn and gerd. Guess what? I went gluten free and now am able to be off prescription drugs for the problem. Unbelievable. I'm telling my surgeons next time I see them. They should make their pts have a cd test before going under the knife. It would have helped me a lot. (I wanted new carpet for the house at the time, but husband made me use our money on another surgery.)

"can you see the beauty inside of me?
what happened to the beauty inside of me?"

DOTSLADY's Photo Posts: 10,015
4/27/07 10:15 P

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Howdy Pardner! Glad to meet you MThippy - you've got a good story. Love to hear those stories. But I'm sorry you had to go through it. There's an Acid Reflux group, if you didn't know (link through my SP page): I'd love it if you shared the story with them (I'm over there all the time trying to tell them about how reflux is related - don't feel very "heard.") THIS might make them listen!

I really appreciate you sharing your Nissan experience, because my dad had that done! Now when he hiccups (I have this same weird hiccup, too) his lung puffs up on the back of his shoulder - apparently he hiccuped while "under" and the doc said that's why it happens. Anyway, I can't help but think he has celiac too. (His mother had alopecia and all those kids have RA, and my aunt had a baby with spina bifada - from lack of folic acid. All the aunts - hey, and the uncles in fact, have very weak hair. One aunt only gets "gas" when she eats cake and bread, so she doesn't eat "much" anymore. Sigh.)

I was diagnosed last year and after I read all about it, I tried to get my parents to test for it. Many months passed and despite my sharing articles and begging, they wouldn't bother. They attribute their symptoms to other things. When I went to visit, I finally made an appt for my dad to go (I should have gone in the room with him!) - and the doc did a bloodtest, only the single TtG rather than the comprehensive panel with 5 tests, and it turned out negative. I still wonder if he's IGA negative, which would prove that TtG unreliable. He's got memory issues just like I had. Sigh. On the bright side, the Nissan DID help his heartburn! He had ulcers too (I don't think he had hpylori).

Here's something to think about with morning sickness (which I had bad for months, then it went away when I had the flu one day. Wonder what *that's* about?) -- it's from a lack of B vitamins. (If I knew then, what I now know!)

Now that you're gluten-free (and make sure it's 100%), you should be absorbing more vitamins and getting very healthy for a baby! Take your gf vitamins - eat lots of fish and veggies! You'll be fine!

Pye: Okay, I won't ask why you have to wait so long for results. (*fingers tapping on the table, eyeballs staring at ceiling*) and I just HATE that razor blade analogy! ew. Glad I didn't have that.

Edited by: DOTSLADY at: 4/27/2007 (22:21)
One person's food is another person's poison.
Celiac Disease: An autoimmune reaction from eating gluten grains: wheat, rye, barley and contaminated oats=nutrient deficiency=cancer. Have 1 of 300 symptoms?
CD stories:

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MONTANAHIPPY's Photo Posts: 100
4/27/07 2:12 P

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Thanks for the support! I hope your daughter heals up quick! We (my folks and I) opted for the surgery because they said the erosion on my esophagas was advancing faster than most people and pills would only help for a few years before I needed to have it done anyway. Of course it was tearing things up, everything I ate I was throwing up! I lived on mac & cheese, french bread, beer, and Whoopers w/ cheese, no tomato! I now regret it, and it's got me spooked for when we start a family, morning sickness is gonna kill me!

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4/27/07 1:35 P

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Hi Montanahippy. Sorry to hear about your doctor messing you up. Up until I was diagnosed, one of the two major symptoms I had was vomiting, the other major stomach aches. It literally felt like I swallowed razor blades and I could feel those razor blades moving every inch thru my intestines! I stopped vomiting when I started the diet. Now I just puke when I drink too much!

I have never heard of what your doctor has done to you though. Interesting, too bad it was incorrect, but interesting. My oldest daughter went for the biospy this week and won't get results until June (don't ask). She was diagnosed with acid reflux disease earlier this year, so should be interesting to see if she is positive for celiac. I'm wondering then if she is, does she then actually have acid reflux??? I'll keep you all posted. Sorry I can't help you out Hippy, but you will get lots of support here.


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WALKSFAR's Photo SparkPoints: (61,794)
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4/27/07 11:31 A

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Very sorry to hear the doctor's messed up. Since throwing up isn't a side effect of my reaction to Gluten, I'm not plagued with that problem. I have tried a product called GlutenEase. It is supposed to help with accidental ingestion of gluten. It didn't help with my symptoms - I have DH not regular Celiac. So I still get the rash irregardless. It might help with your problem though.


Being a Christian isn't about religion. It's about a relationship with the One who made us. I'm so thankful to be one of His.

I can do all things through Christ who strengthens me. Philippians 4:13

Do not ask the Lord to guide your footstep, unless you are willing to move your feet.

God grant me the serenity to accept those I cannot change, to change the one I can,
and the wisdom to know itís me.

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MONTANAHIPPY's Photo Posts: 100
4/27/07 10:41 A

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Like many of us, I was sick for more than 3 years before self diagnosing. I've been GF for two years now, but not without some major, painful steps along the way. While doctors were trying to figure out what was wrong, they misdiagnosed me with Acid Reflux and preformed a Nissan. It wraps the top of your stomach around the bottom of your esophagus and helps prevent acid from moving up. On the down side, I can never throw up or burp again. If I get any Gluten, it's an immediate reaction to throw up, so I end up for the next 20 minutes or so dry heaving and feeling like crap for the next 24 to 48 hours. Is there anyone else out there like me? How do you handle or treat an accident if you can't get rid of it? It doesn't happen often, but when it does my whole life shuts down for a couple days. Any suggestions would help!
PS-I'm glad I found this site, I needed friends! There arn't many of us in Montana!

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