Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Celiac Disease?

Tigercat17

By Tigercat17
in Coping with Celiac Disease

Recommended Posts

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. :(

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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:

Open Original Shared Link

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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!

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Scott Adams
      0

      What the College Dining Hall Experience Means for Students with Celiac Disease (+Video)

    2. sc'Que?
      - sc'Que? commented on Celiac.com Sponsor: Review's article in Product Reviews
      1

      Bold Taste, No Alcohol & Crafted to Remove Gluten: Daura Non-Alc Beer Takes Alcohol-Free Beer to the Next Level

      @Daura Damm: Can we get a gluten-free Imperial Oatmeal Stout, please? Please?!?
    3. Mari
      - Mari replied to Jmartes71's topic in Related Issues & Disorders
      21

      My only proof

      I think, after reading this, that you areso traumatized by not being able yo understand what your medical advisors have been what medical conditions are that you would like to find a group of people who also feel traumatized who would agree with you and also support you. You are on a crusade much as the way the US Cabinet official, the Health Director of...
    4. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      21

      My only proof

      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac...
    5. knitty kitty
      - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      44

      Supplements for those Diagnosed with Celiac Disease

      @Scatterbrain, Thiamine Vitamin B1 and amino acid Taurine work together. Our bodies can make Taurine from meats consumed. Our bodies cannot make Thiamine and must consume thiamine from food. Meat is the best source of B vitamins like Thiamine. Vegetarians may not make sufficient taurine since they don't eat meat sources of taurine...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,551
    • Most Online (within 30 mins)
      7,748
    spencercoleadams
    Newest Member
    spencercoleadams
    Joined
  • Celiac.com Sponsor (A20):

  • Celiac.com Sponsor (A22):



  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Mari
      My only proof

      By Mari · Posted

      I think, after reading this, that you areso traumatized by not being able yo understand what your medical advisors have been  what medical conditions are that you would like to find a group of people who also feel traumatized who would agree with you and also support you. You are on a crusade much as the way the US Cabinet  official, the Health Director of our nation is in trying to change what he considers outdated and incorrect health advisories. He does not have the education, background or experience to be in the position he occupies and is not making beneficial decisions. That man suffered a terrible trauma early in his life when his father was assonated. We see now how he developed and worked himself into a powerful position.  Unless you are willing to take some advice or  are willing to use a few of the known methods of starting on a path to better health then not many of us on this Celiac Forum will be able to join you in a continuing series of complaints about medical advisors.    I am almost 90 years old. I am strictly gluten free. I use 2 herbs to help me stay as clear minded as possible. You are not wrong in complaining about medical practitioners. You might be more effective with a clearer mind, less anger and a more comfortable life if you would just try some of the suggestions offered by our fellow celiac volunteers.  
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac? Your not eating gluten so its something else.Medical caused me depression. I thought I was safe with my former pcp for 25 years considering i thought everything I went through and going through will be available when I get fired again for health. Health not write-ups my health always come back when you're better.Im not and being tossed away at no fault to my own other than shitty genes.I was denied disability because person said he didn't know how to classify me! I said Im celiac, i have ibs, hernia, sciatica, high blood pressure, in constant pain have skin and eye issues and menopause intensified everything. With that my celiac nightmare began to reprove my disregarded disease to a bunch of clowns who think they are my careteam when they said I didn't have...I feel Im still breathing so I can fight this so no body else has to deal with this nightmare. Starting over with " new care team" and waisting more time on why I think I am when diagnosed in 1994 before food eliminated from my diet. P.s everything i went through I did write to medical board, so pretty sure I will continue to have a hard time.
    • knitty kitty
      Supplements for those Diagnosed with Celiac Disease

      By knitty kitty · Posted

      @Scatterbrain, Thiamine Vitamin B1 and amino acid Taurine work together.  Our bodies can make Taurine from meats consumed.  Our bodies cannot make Thiamine and must consume thiamine from food.  Meat is the best source of B vitamins like Thiamine.   Vegetarians may not make sufficient taurine since they don't eat meat sources of taurine.  Seaweed is the best vegetarian source of taurine. Vegetarians may not consume sufficient Thiamine since few veggies are good sources.  Whole grains, legumes, and nuts and seeds contain thiamine.  Many of these sources can be hard to digest and absorb for people with Celiac disease.   You may find taking the forms of thiamine called Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) and a B Complex will give the benefits you're looking for better than taurine alone.  
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @Jmartes71, I went to Doterra's site and had a look around.  The Doterra TerraZyme supplement really jumped out at me.  Since we, as Celiacs, often have digestive problems, I looked at the ingredients.  The majority of the enzymes in this supplement are made using black mold, Aspergillus!  Other enzymes are made by yeast Saccharomyces!  Considering the fact that Celiac often have permeable intestines (leaky gut syndrome), I would be very hesitant to take a product like this.  Although there may not be live black mold or yeast in the product, the enzymes may still cause an immune system response which would definitely cause inflammation throughout the body.   Skin, eyes, and intestines are all made from the same basic type of cells.  Your skin on the outside and eyes can reflect how irritated the intestines are on the inside.  Our skin, eyes, and intestines all need the same vitamins and nutrients to be healthy:  Vitamin A, Niacin B3 and Tryptophan, Riboflavin B2, Biotin B7, Vitamin C, and Omega Threes.  Remember that the eight B vitamins work together.  Just taking high doses of just one, vitamin like B12, can cause a deficiency in the others.  Taking high doses of B12 can mask a Folate B9 deficiency.  If you take B12, please take a B Complex, too.  Thiamine B1 can be taken in high doses safely without toxicity.  Thiamine is needed by itself to produce energy so every cell in the body can function, but Thiamine also works with the other B vitamins to make life sustaining enzymes and digestive enzymes.  Deficiencies in either Niacin, Vitamin C, or Thiamine can cause digestive problems resulting in Pellagra, Scurvy, and Gastrointestinal Beriberi.   If you change your diet, you will change your intestinal microbiome.  Following the Autoimmune Protocol Diet, a Paleo diet, will starve out SIBO bacteria.  Thiamine keeps bacteria in check so they don't get out of control as in SIBO.  Thiamine also keeps MOLDS and Yeasts from overgrowth.   Menopause symptoms and menstrual irregularities are symptomatic of low Vitamin D.   Doctors are not as knowledgeable about malnutrition as we need them to be.  A nutritionist or dietician would be more helpful.   Take control of your diet and nutrition.  Quit looking for a pill that's going to make you feel better overnight.  The Celiac journey is a marathon, not a sprint.   "Let food be your medicine, and let medicine be your food."
    • RUKen
      Are Lindt chocolate balls gluten free?

      By RUKen · Posted

      The Lindt (Lindor) dairy-free oat milk truffles are definitely gluten-free, and (last time I checked) so are the white chocolate truffles and the mint chocolate truffles. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.