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Celiac Disease?

Tigercat17

By Tigercat17
in Coping with Celiac Disease

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Tigercat17 Enthusiast
Tigercat17
Posted

Hi everyone,

I'm new here & I just had a upper endoscopy done yesterday. The doctor thinks I maybe sensitive to wheat gluton? ould this meas Celiac disease? Just to give you all some background - I've been having serious thoart pain. I could't talk for the whole month of July. The doctors treated me with steriods, antibotic & then 40mg Prilose twice a day. I've also been taking Gavison. Just last week I've been having a horrible bloated feeling & I'm also losing weight. I'38 years old, 100 lbs & 5'1". I'm wondering if it's the Prilosec or Gavison that's making me feel bloated? I can't afford to lose anymore weight. During the upper endoscopy they did take some biopsies & I won't know the results until Friday. They also found a hiatal hernia also. I was surprised about that, too. I'm too young to have all of these health problems.

I'm really freaking out about this. I did cut back my Prilosec to 20mg daily, so I'll see if that helps me. But the idea of Celic disease really scares me. I'm a picky eater to begin with & I'm not sure what I'm goin to eat if I can't eat my favorite foods. And I'm so skinny. Someone please help. :(

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momxyz Contributor
momxyz
Posted

hi, your medical history sounds quite complicated so I am not going to offer an opinion on whether you are gluten intolerant or have celiacs; I'll leave that to others more experienced than I.

But if you have to take up the gluten free lifestyle for your health you should not feel like its the end of the world! There are actually lots of options, and not bland ones either. Our family made a great gluten free pizza just last night.

It will take some learning but there are plenty of folks on this board to give you pointers and moral support.

BTW, celiac's or gluten intolerance can cause weight loss... because of the inflammation and damage that gluten causes if you are sensitive to gluten, your body cannot properly absorb all the nutrients from your food. So a gluten free diet can help individuals to put on needed weight.

I'm 5' 2" and I had dropped to 105 over the past few months. I attributed it to major STRESS dealing with family problems.... but I've been gluten free for 5 weeks now and I have put on a couple of pounds, without changing how much I eat at all.

Tigercat17 Enthusiast
Tigercat17
Posted
  • Author
hi, your medical history sounds quite complicated so I am not going to offer an opinion on whether you are gluten intolerant or have celiacs; I'll leave that to others more experienced than I.

But if you have to take up the gluten free lifestyle for your health you should not feel like its the end of the world! There are actually lots of options, and not bland ones either. Our family made a great gluten free pizza just last night.

It will take some learning but there are plenty of folks on this board to give you pointers and moral support.

BTW, celiac's or gluten intolerance can cause weight loss... because of the inflammation and damage that gluten causes if you are sensitive to gluten, your body cannot properly absorb all the nutrients from your food. So a gluten free diet can help individuals to put on needed weight.

I'm 5' 2" and I had dropped to 105 over the past few months. I attributed it to major STRESS dealing with family problems.... but I've been gluten free for 5 weeks now and I have put on a couple of pounds, without changing how much I eat at all.

Hi, Thanks so much for trying to calm me down. I've been so worried. I've been having problems since July. I just want to know what's going on with me. I'm so tried of not feeling good & going to the doctors only to find out they really don't know what it is.... How were you diagnosised with Celiac disease? If you don't mind me asking....

Ahorsesoul Enthusiast
Ahorsesoul
Posted

I have a hiatal hernia and have some of your same symptoms. No medication worked so I put the head of my bed up on four inch blocks. I also drink a small glass of orange juice before going to bed. Hard to believe but the OJ works better than any pills ever did.

If you are celiac or gluten intolerant, once you are totally gluten free you will feel better and you won't miss your favorite gluten containing food. Besides there isn't any food that can't be duplicated gluten free.

momxyz Contributor
momxyz
Posted
Hi, Thanks so much for trying to calm me down. I've been so worried. I've been having problems since July. I just want to know what's going on with me. I'm so tried of not feeling good & going to the doctors only to find out they really don't know what it is.... How were you diagnosised with Celiac disease? If you don't mind me asking....

I actually haven't been "officially" diagnosed. My story starts with my daughter. At 11 she had some findings that suggested possible celiacs disease; I've posted her story elsewhere on this board. Cutting to the chase, back then testing did not confirm celiacs and so we weren't advised to avoid wheat. Recent problems - for both of us - inspired us to go gluten free. This has helped us, and we are content to proceed without an "official" diagnosis as this point.

Pm me if you want, I would be happy to share further details of our personal experience, rather than repeat what I have posted elsewhere.

Be aware that the diagnosis of Celiacs revolves around very specific criteria. If you read this board, you will find repeated occurrences where people have had supposedly "negative" tests and yet clearly are experiencing adverse reactions to exposure to gluten. There are many people who do not match the strict diagnostic criteria for Celiac disease, but yet are stll gluten intolerant, and also benefit from the gluten free lifestyle.

I hope you keep us posted as you go thru the diagnostic process..

Tigercat17 Enthusiast
Tigercat17
Posted
  • Author
I have a hiatal hernia and have some of your same symptoms. No medication worked so I put the head of my bed up on four inch blocks. I also drink a small glass of orange juice before going to bed. Hard to believe but the OJ works better than any pills ever did.

If you are celiac or gluten intolerant, once you are totally gluten free you will feel better and you won't miss your favorite gluten containing food. Besides there isn't any food that can't be duplicated gluten free.

Thanks for the reassurance! Wow! I can't believe OJ works for you! I have been avoiding it like the plague for the last three months! I do have my bed head board up 4 inches. I'm not sure if it helped, but I wonder if I'd feel worse if I didn't. I've been having a burning feeling in my throat during the day. I acuatlly feel the best when I'm sleeping & when I wake up in the morning. I'm very grateful for that!

I wonder if the Prilosec I'm on is making me feel worse. I've been on it for 6 weeks now & I feel extremly bloated after I eat & after dinner time is the worst! I never felt anything like this before. I feel like my food is not digesting properly. I told the GI doc my symptoms & he told me to stay on them??? I did cut back some to 20mg a day, but I wonder if I need to try another PPI? I'd like to get off them all together. It seems they only add to more health problems. And I have enough... ;)

Has anyone tried Absorb Aid to help with digestion? Or any other digestive enzymes? I tried the Absorb Aid tonight, but it's funny, when I asked my GI doctor he acted like he never heard of it??? And he said I shouldn't take it until we find out my results. I know, maybe I shouldn't have taken it. But, I figured if it doesn't work & if it makes me sick, I'll just stop using it. This is all a big experiment for me. I'm not sure if it helped or not. It's still too early. I will keep you all updated.

Thanks for all your help! This is so new to me & it's so nice to have people that are welling to take the time & help!Means so Much!

Ahorsesoul Enthusiast
Ahorsesoul
Posted

You could also try a tablespoon of apple cider vinegar a few times a day. It needs to be real apple cider vinegar and not just flavored. It states this on the label. I just swallow the vinegar and follow it with water. Some people say to mix it in water. I figure it tastes bad enough that I don't want to swallow 8 oz of icky tasting water.

This article explains why vinegar is better for your problem than the pills prescribed. Same idea applies to citus juice, it balances the acid. When I first went into nursing in the 70s we were giving people cream every two hours if they had bleeding ulcers. Now they've found out dairy can increase the problem instead of help. The exactl opposite of what we were taught (and the doctors were taught)

Open Original Shared Link

And why apple cider:

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AKcollegestudent Apprentice
AKcollegestudent
Posted
Hi everyone,

I'm new here & I just had a upper endoscopy done yesterday. The doctor thinks I maybe sensitive to wheat gluton? ould this meas Celiac disease? Just to give you all some background - I've been having serious thoart pain. I could't talk for the whole month of July. The doctors treated me with steriods, antibotic & then 40mg Prilose twice a day. I've also been taking Gavison. Just last week I've been having a horrible bloated feeling & I'm also losing weight. I'38 years old, 100 lbs & 5'1". I'm wondering if it's the Prilosec or Gavison that's making me feel bloated? I can't afford to lose anymore weight. During the upper endoscopy they did take some biopsies & I won't know the results until Friday. They also found a hiatal hernia also. I was surprised about that, too. I'm too young to have all of these health problems.

I'm really freaking out about this. I did cut back my Prilosec to 20mg daily, so I'll see if that helps me. But the idea of Celic disease really scares me. I'm a picky eater to begin with & I'm not sure what I'm goin to eat if I can't eat my favorite foods. And I'm so skinny. Someone please help. :(

I distinctly remember looking at the nutritionist after the words "celiac disease" crossed her lips and going, "Oh, hell no." I was extremely furious with her, scared of a diagnosis, and didn't want to deal with the diet, but I was in so much pain that something had to change. I'm not one of the ones who dropped weight--if anything I gained about 20 lbs over the course of two years and then couldn't get it to budge. I'm 5'2", and about 130lbs.

There are a lot of really supportive people on this site who can help you if it celiac or gluten sensitivity. The two aren't completely synonymous, but the diet and the end result from the diet is the same.

  • 2 weeks later...
Tigercat17 Enthusiast
Tigercat17
Posted
  • Author

Well, I do have celiac disease. Thanks for all your advice & tips. I did try the apple cidar vineager. But I think it made the pain on my left side (under my ribcage) hurt more, so I stopped using it. I think it did help with the digestion though. But I thought it might not be good for me to use right now since my stomach & intestines need to heal.

Now, I'm still feeling bloated and full.... Still real skinny....I've been on the diet for about a week now & I don't feel much better. I can't wait to see the nutriutist Wednesday. He also has celiac disese & he sounded so nice when I talked to him on the phone. I can't wait to meet him.

How long does it take to feel better after being on the gluten free diet?

Thanks for all your help!

brigala Explorer
brigala
Posted
How long does it take to feel better after being on the gluten free diet?

Unfortunately, that question is impossible to answer. Some people even feel worse at first as their bodies detox. Others feel better right away but feel even worse with accidental exposure to gluten (and you WILL have accidents at first).

Me, personally, I "cut back" on gluten and felt so much better so quickly and got so used to not running to the bathroom after every meal that I found I couldn't even look at something with gluten in it without wanting to get it as far away from me as possible. I went gluten-free without really meaning to at first because of this (I intended to get tested before going on the diet but it didn't work out that way). I still don't really know whether I have a gluten problem or just a wheat problem (I've never had symptoms I could point to from barley or rye) but I can't bring myself to even risk any gluten-containing food.

My non-GI symptoms, the chronic fatigue, the chronic pain, etc.. took longer to clear up -- about 6 months. I don't know how much of that was due to the learning curve and accidental gluten exposure at first, and how much was due to how long it actually took to heal the damage.

Best of luck to you. Let us know how your visit with the dietician goes.

-Elizabeth

GFinDC Veteran
GFinDC
Posted

well, welcome to the celiac world! I see you have Hashimoto's thyroidits? That should be a tip off to your doctor to test you for celiac anyway. Hashimoto's is one the associated conditions with celiac. There are other associated autoimmune conditions too. Which just means that people with celiac, an autoimmune disease, sometimes develop other autoimmune diseases. It seems likely that going gluten-free will reduce your chances of developing these other conditions.

I think the best way to start the diet is to go on a whole foods kick. Avoid any processed foods and limit spices to salt and pepper. This way you eliminate lots of preservatives and odd sounding chemicals. Which can give your body a little less work to do eliminating (hopefully) that junk. You might want to search for threads on elimination diets also. some of us have other intolerances besides gluten and you can test your body's reaction with an elimination diet.

Tigercat17 Enthusiast
Tigercat17
Posted
  • Author

Thanks for tips everyone! I've been on the diet for about 10 days now & the acid reflux is just about gone. My throat , chest & stomach are still sore though. But at least I don't have that constant burning in my throat! It was so painful! I lost my voice the whole month of July. I'm sure it will take some time for my body. I just have to be gentle & patient with myself.

I seen the dietitian a few days ago. He was soooo helpful. He also has celiac disease, too. He gave me a lot of tips on what to eat to gain weight. I thought I'd share them with everyone so here it is.

1. He recommended to eat lots of protein(at least 6 grams), fresh meats, peanuts (if your not allergic), peanut butter & eggs.

2. At least 1 yogurt a day - reg. Yoplait

3. 1 ensure a day - can even drink two

4. lots of fruit juice (grape juice is wondeful for this -lots of calories!)

5. When eating - eat meats & starches first then if you have room eat the veggies.

Keep in mind I'm not a doctor. I just wanted to share this information with people who are like me -very skinny from the celiac disease.

I hope this helps!

Sparty Newbie
Sparty
Posted
Hi, Thanks so much for trying to calm me down. I've been so worried. I've been having problems since July. I just want to know what's going on with me. I'm so tried of not feeling good & going to the doctors only to find out they really don't know what it is.... How were you diagnosised with Celiac disease? If you don't mind me asking....

it is a simple blood test! yep, that's it!

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