Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Mind Blown Help?
0

19 posts in this topic

Completely new to this! I have had a very very bad year! I was no longer able to work I am 26 because I was completely fatigue and all kinds of other problems. I was diagnosed with chronic fatigue syndrome. Which is way more than just fatigued. Also they found I may have pots. I have to wear a heart rate monitor and when I stand up my heart goes crazy and if the alarm goes off I am supposed to lay down, which is usually within minutes. So my last phone conference with my doctor she recommended I get tested for celiac and go gluten free. Well I have no job no insurance and no money so to say the least the test aren't going to happen! But I have been gluten free now for 2 weeks. I do feel overall more healthy with more complications. What I mean by that was I always have ate dairy no problem but now even the littlest amount of dairy gives me all kinds of stomach issues. This started with the diet. So I have read that can happen with celiac. So my wonder is does that suggest I am indeed celiac or do normal people who go gluten free have this lactose intolerance problem as well?! Also I am stressed if I ever want answers I may not be able to get the test done because I have gone gluten free, which I am okay with if I have celiac but if not I would love to be eating cookies right now! Feedback guidance please

0

Share this post


Link to post
Share on other sites


Ads by Google:

My sister has POTS and has a lot of issues with it.  She does better gluten free but she tested negative for celiac.  Can you get disability?

0

Share this post


Link to post
Share on other sites

I am still trying to get disability. I keep telling myself I'll be better and not have you use it, but a year later and still on the couch. I did apply once and got denied and of course I need to do it again. It's hard asking for help!

0

Share this post


Link to post
Share on other sites

Welcome to the board.

 

You symptoms do fit with celiac disease or non-celiac gluten intolerance (NCGI). That's great that you are seeing improvements so quickly. As long as you stay gluten-free, that's all you really need to treat this disease in the long term - the diagnosis isn't that important unless you get food subsidies (UK I believe) or if it helps you stay gluten-free.

 

I noticed my lactose intolerance much more after I gave up gluten. I think I had stomach pain enough before that the lactose pain wasn't all that noticeable. Once I felt better, I noticed it more when I felt poorly... if that makes sense.  ;)  About half of all celiacs have problems with lactose when diagnosed (lactase is made on the villii that get destroyed in the intestines) but most seem to be able to consume dairy again after many months or years gluten-free. I have been dairy free for so long now that I didn't bother adding it back into my diet now that I've been gluten-free for well over a year - I got used to it and no longer miss it.... well okay, I missed ice cream a bit.  LOL

 

Hang in there. The first few month gluten-free are the hardest, by far! It's hard to change decades worth of eating habits when no one else around you is changing. Just keep at it and it will get easier, plus once you feel really well, handling stress gets soooo much simpler (IMHO).

 

Best wishes.  :)

0

Share this post


Link to post
Share on other sites

Hi Ambarnha,

 

Welcome to the forum! :)

 

If you are feeling better without gluten, that pretty much tells the tale about the need to be gluten-free right?  Testing and a diagnosis is possible after being gluten-free, but you would have to go back on gluten for 6 weeks to 3 months to get the antibodies up in the bloodstream.  Many people don't want to do that gluten challenge because it is a tad on the uncomfortable side.  Or you might have NCGS, and there are no tests to show that yet.  But you would still have the symptoms of celiac disease with it.

 

One problem celiac causes is mal-absorption of nutrients.  So it is possible you are low on some vitamins and minerals your body needs to function and heal.  That can make everything harder as your body can't repair itself without the right nutrients.  After being gluten-free a while your gut would heal and you would begin absorbing nutrients better.  But that can take  awhile.  So it may be a good idea to get lots of protein and take some vits/mins.  Gluten-free of course.

 

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.
Get your vitamin/mineral levels tested also.
Don't eat in restaurants
Eat only whole foods not processed foods.
Eat only food you cook yourself, think simple foods, not gourmet meals.
Take probiotics.
Take gluten-free vitamins.
Take digestive enzymes.
Avoid dairy.
Avoid sugars and starchy foods.
Avoid alcohol.
Watch out for cross contamination.

Helpful threads:

FAQ Celiac com
http://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101
http://www.celiac.com/gluten-free/topic/91878-newbie-info-101/

0

Share this post


Link to post
Share on other sites




Thank y'all both for your feedback! Very very helpful. Okay so further looking I can find a lot of people who are gluten intolerant that have the side effect to the gluten diet to have lactose intolerance. But do you know of anyone that has? I mean I did not have the issues I am having until like day 3 going gluten free. I swear I still have been eatin so little and feel so fat and bloated! I do seem to be handling lactose better pain and gas wise but I am sure that's what is making me feel like a blow fish!

0

Share this post


Link to post
Share on other sites

Thank y'all both for your feedback! Very very helpful. Okay so further looking I can find a lot of people who are gluten intolerant that have the side effect to the gluten diet to have lactose intolerance. But do you know of anyone that has?!

Me. :) Dairy gave me very similar symptoms to gluten ingestion.

You are still so new to being gluten-free that your symptoms could still be from gluten intolerance, or even the withdrawal. It can take months for your body to recover.

0

Share this post


Link to post
Share on other sites

That makes sense. Thank you! I will keep it going! Is the feeling like a blow fish normal too?

0

Share this post


Link to post
Share on other sites

That makes sense. Thank you! I will keep it going! Is the feeling like a blow fish normal too?

 

I was mistaken as being pregnant again way more times than anyone should be!  LOL It felt like my belly would get new stretch marks and it was often (once every day or two) difficult to stand up straight because it hurt.... It's not normal, but it's common in people with food intolerances.

0

Share this post


Link to post
Share on other sites

Yeah I have taken two pregnancy test in the last few months because i felt the same way! So when did this get better for you?

0

Share this post


Link to post
Share on other sites

I too can relate to looking pregnant. Before my worst symptoms hit, I always had a flat stomach and stored my excess weight in my butt and thighs, but when I suspect Celiac disease had come on full force, my stomach was always bloated and I actually lost weight, but my dang tummy just wouldn't unbloat itself!

 

I also can relate to chronic fatigue and needing to admit you need help. I'm going through the same thing this year. I've missed so much class this semester, it's going to be very, very hard to salvage my grades by finals. Try not to get too down and whatever you do, don't let others get you down. Don't listen to any accusations that you're not truly sick or just being lazy. Chronic illness is very real and debilitating for the sufferer. It especially sucks when you have GI issues because it's embarassing to tell your prof or employer why you missed. I remember missing a class and a half once because I spent an hour in a campus bathroom desperately trying to get ahold of the nausea and diarrhea so I wouldn't miss the rest of the day. And there were many days I spent on the couch not attending class or working period! Sometimes you want to be productive, but your body wages an all out assault on your ability to accomplish anything... It can and will get better though.

 

Best of luck to you. I hope you get a proper diagnosis and start the road to healing soon!

0

Share this post


Link to post
Share on other sites

Yeah I have taken two pregnancy test in the last few months because i felt the same way! So when did this get better for you?

The bloated belly look improved overtone first two or three months for me. Other symptoms took longer to improve, and a few symptoms got worse from 3-6 months gluten-free. Everybody is different though. Some feel all better within a few weeks where as others an take years.

0

Share this post


Link to post
Share on other sites

I am still trying to get disability. I keep telling myself I'll be better and not have you use it, but a year later and still on the couch. I did apply once and got denied and of course I need to do it again. It's hard asking for help!

As for the disability, give the names and addresess of any and all Drs. you have seen, even if you don't think it relates.  I am lucky.  I got it first try but my problems are not the same as yours.

0

Share this post


Link to post
Share on other sites

My bloated belly took 8 months before it started to go down sometimes.  At 18 months gluten free I notice it bloats up and down.  At the height of my problems my tummy was constantly bloated with no relief.

 

I had trouble when I wasn't diagnosed with my heart.  My blood pressure would dive and stay down when I stood up.  Supplements brought my heart to a normal curve.  I would recommend you find out what nutrients you are low in and supplement them.  I use to feel that when I stood up I was crashing.  It isn't fun and I am better.  Don't lose hope, but also try to solve this soon.  Magnesium is one supplement that many of us need and I take drops of a magnesium sulfur combo to bowel tolerance every morning. 

 

Find out as soon as possible about the celiac and nutrient levels, so your body can begin healing.

 

D

0

Share this post


Link to post
Share on other sites

Thank y'all both for your feedback! Very very helpful. Okay so further looking I can find a lot of people who are gluten intolerant that have the side effect to the gluten diet to have lactose intolerance. But do you know of anyone that has? I mean I did not have the issues I am having until like day 3 going gluten free. I swear I still have been eatin so little and feel so fat and bloated! I do seem to be handling lactose better pain and gas wise but I am sure that's what is making me feel like a blow fish!

 

Hi Albarnha,

 

"Normal" people shouldn't have any reaction to stopping eating gluten.  Changes in digestion after stopping gluten are suggestive of an issue with digesting gluten, or a reaction by the body to gluten.  The ability to digest dairy lactose shouldn't change  because of not eating gluten in a non-celiac.

 

Bloating can be and often is, a sign of bacteria overload or imbalance in the gut.  Bacteria are needed to help digest our food, but sometimes they get out of whack when things aren't going just right in the gut.  Staying off sugar, carbs (rice, potato, etc) can help because bacteria thrive on those foods.  Carbs are turned into sugars very quickly on the gut.  The more sugar the bacteria get, the more they grow and produce gas and bloating.  Sticking to mainly meat and vegetables (non-starchy vegs) in your diet can help.  Pro-biotics can help too.  The healing process in the gut is changing the environment for the bacteria that live there.  Lots of change can mean lots of upset.  Recovering from celiac disease damage is not an overnight thing.  It can take months or years as was said earlier.   Keeping the diet simple for a few months can help to stabilize the situation.

0

Share this post


Link to post
Share on other sites

I too can relate to looking pregnant. Before my worst symptoms hit, I always had a flat stomach and stored my excess weight in my butt and thighs, but when I suspect Celiac disease had come on full force, my stomach was always bloated and I actually lost weight, but my dang tummy just wouldn't unbloat itself!

 

I also can relate to chronic fatigue and needing to admit you need help. I'm going through the same thing this year. I've missed so much class this semester, it's going to be very, very hard to salvage my grades by finals. Try not to get too down and whatever you do, don't let others get you down. Don't listen to any accusations that you're not truly sick or just being lazy. Chronic illness is very real and debilitating for the sufferer. It especially sucks when you have GI issues because it's embarassing to tell your prof or employer why you missed. I remember missing a class and a half once because I spent an hour in a campus bathroom desperately trying to get ahold of the nausea and diarrhea so I wouldn't miss the rest of the day. And there were many days I spent on the couch not attending class or working period! Sometimes you want to be productive, but your body wages an all out assault on your ability to accomplish anything... It can and will get better though.

 

Best of luck to you. I hope you get a proper diagnosis and start the road to healing soon!

Wow well sounds like its been hitting you hard too! Well I can defintally relate. I have graduated but while I was in school I would have periods where my brain was so fogged I couldnt think straight or I was so fatigued that I couldnt get out of bed for week or two. The doctor told me it was just anxiety and I knew there was more because I wasnt anxious.  I later had other small signs and new something was wrong but made it to graduation and was sure that I would get better once I get a job and could get a diagnosis.  So I became a teacher which was super stressful as a first year teacher. I spiraled and went to the hospital the first week and by 3 months was bed ridden and out of work.  They told me I had chronic fatigue syndrome and also POTS.  Recently they told me possibly celiac but since I didnt have the money to get a diagnosis I stopped eating gluten.  Even tho since I have stopped eating gluten I have had alot of stomach issues I am beginning to feel better.  I am unsure what this means. I know all my symptoms could be celiac so maybe its resolving itself or maybe I am psyching myself and there is a crash coming, which has happened all to much in the past year.  So proper diagnosis I am unsure if I will ever get but I am trying to still have hope!  Good luck and just remember that when you get a job those issues only escalate so find a way to make it work!  Thank you for your input!!

0

Share this post


Link to post
Share on other sites

Thank you everyone! This has been super helpful!  I am glad to hear that the bloating pregnancy  blow fish feeling has gone away for most of yall.  I am hoping I am on the shorter end of that time frame but will happily welcome it as soon as it wants to resolve itself! 

 

Juliebove- I am in the middle of reapplying, long process but it'll get there! Hard to ask and accept help! But thank you for your encouragement!

 

1desprateladysaved- Interesting it sounds like the heart thing is alot like POTS so its interesting that vitamins and supplements helped!  I need to get those test done but unfortunately I am having an issue with money. I am trying to get disability and medicare only so I can get the help I need so I can get back to work!  Did you get the magnesium over the counter or with a perscription?

 

 

 
0

Share this post


Link to post
Share on other sites

Hi Albarnha,

 

"Normal" people shouldn't have any reaction to stopping eating gluten.  Changes in digestion after stopping gluten are suggestive of an issue with digesting gluten, or a reaction by the body to gluten.  The ability to digest dairy lactose shouldn't change  because of not eating gluten in a non-celiac.

 

Bloating can be and often is, a sign of bacteria overload or imbalance in the gut.  Bacteria are needed to help digest our food, but sometimes they get out of whack when things aren't going just right in the gut.  Staying off sugar, carbs (rice, potato, etc) can help because bacteria thrive on those foods.  Carbs are turned into sugars very quickly on the gut.  The more sugar the bacteria get, the more they grow and produce gas and bloating.  Sticking to mainly meat and vegetables (non-starchy vegs) in your diet can help.  Pro-biotics can help too.  The healing process in the gut is changing the environment for the bacteria that live there.  Lots of change can mean lots of upset.  Recovering from celiac disease damage is not an overnight thing.  It can take months or years as was said earlier.   Keeping the diet simple for a few months can help to stabilize the situation.

See thats what I understood!  Your post was very very helpful.  I had take diatomacious earth before and am going to start back because its supposed to help rid of bacteria and parasites.  I will get some probiotics and go more cave man diet (meat and veggies).  I really do wish it was overnight to heal because I am so over this!  Your right tho, Thank you!!

0

Share this post


Link to post
Share on other sites

Hi Ambarnha,

 

The bacteria aren't all bad.  We do need them to help us digest food.  But there are many strains of them in the gut and they have various niches they fit.  It's when they get out of balance that there are problems.  That's why it is important to take the pro-biotics, to help restore a proper bacterial balance.  Try to get a pro-biotic with multiple strains to take.

 

A paleo like diet is a good way to go!

 

 

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      103,634
    • Total Posts
      918,415
  • Topics

  • Posts

    • amalgam dental fillings - remove or not?
      My friend, I'm sorry to hear of your pain. I don't know if mercury is related, but I will give you my brief experience. I went through so many health issues, medications, and dr's and nobody could find anything wrong with me, but I knew something was wrong. I've been through many doctors, shots, pills, etc and nothing helped. For me it all came down to gluten. I had blood tests that shown the antibodies and the endoscopy that proved I had celiac, which I don't think is needed. If your body makes the antibodies I can't help to believe you have it. Anyway, long story short. If you are sick, you are sick and if a doctor can't find the reason, move on to a new doctor. Celiac, at least for me was simple. Stop eating gluten and every other health problem goes away. I have 30 + year old amalgam fillings and I feel amazing as long as I don't put anything in my mouth that isn't naturally gluten free, which means I only eat meat and vegetables. Our bodies are all different. I guess my only advice to you is if you're sick, your sick. Nobody lives inside your body but you and you know best if you feel better. Don't be afraid to stand up for yourself. 
    • healthy bread recipe?
      Ok thank you for the input! I am happy to hear what you think about her biopsy. Her GI is actually getting a second opinion from the celiac specialist. Our appointment is in a week. I have always thought she had celiac too. I asked them to do a biopsy years ago and they did but it was normal. She has more neurological symptoms than GI. She has headache and POTS. But she was reacting to all kinds of foods all of the sudden a few months ago. The low histamine diet really helped and she tolerates more foods now. I make almost everything from scratch, there is no gluten anywhere in the house and I don't use gums because she and I react to them. Breakfast is the hardest. Eggs are high histamine, she can't have oats, can't have fermented foods (yogurt), Breakfast is a nightmare. Many fruits and veggies are high histamine. She eats the ones she can tolerate. That's why I was asking about breads. What do you eat for breakfast? Are flax seeds safe or are they like oats? I can't find any flax seeds that say certified gluten free.
    • Could this be celiac or is it really just IBS?
      Hi! So I've never posted in a medical forum but y'all seem super helpful so I figured I'd throw this out there! Sorry if this is long lol. Basically, I'm a 22 year old who has stomach problems for as long as I can remember and it's recently gotten worse. I remember having bad stomach aches and diarrhea off and on since I was little. I finally told my parents and saw a GI in high school who took an xray, said it was IBS, and told me to eat more fiber. Around the same time I was feeling weak all the time and I was having what kinda felt like panic attack symptoms without the actual psychological panic. It kind of felt like a hot flash or too much adrenaline? I just kept telling the doctors that I felt "off". I was also diagnosed with atrial flutter, sinus tach, and asthma for no apparent reason, and I just felt like crap in general some days with no explanation.  I leaned to deal with my stomach problems because everything seemed to come and go. Oddly enough when I went away to college it was a little better for my first year or two. Fast forward to about a year ago, and it started getting more consistent so I went to a new GI. She ordered an ultrasound of my abdomen and from there I actually found out that I had a poorly functioning gallbladder (without stones). I had that taken out in November and have not felt any better since. What's weird is that I never had what I would consider "gallbladder pain", as there really isn't a particular spot that hurts every time. Also I want to add that I am a super levelheaded person, so my doctor telling me it's IBS and to cut stress and see if it helps makes me roll my eyes. This is often how my diarrhea starts off these days: I'll feel bad hot flashes or just "off" and foggy for no reason, then hear the gurgles, get pain, and then diarrhea. Most of the time I feel better after that; sometimes I don't. But I think it's weird that I often feel fluish before my stomach even starts hurting.  Basically I just have all these weird vague symptoms that don't seem related and have been coming and going since at least high school. My current GI doc ordered IGA and IGG tests last summer which came back negative. She also did a colonoscopy a few weeks ago and that was negative too. Now she wants to do a small bowel xray with barium.  Here are my main symptoms: diarrhea 2-6 x a day (it ranges from just loose stools to full-on watery)  severe bloating to the point I look pregnant weird hot flashes that seem correlated to my stomach problems headaches had my gallbladder taken out even though I'm 22 and normal weight short stature (4' 10") nausea bad eczema   Does this really seem like IBS or could my blood results be wrong? My doctor seems to think she's thoroughly tested me for celiac. Would the small intestine xray show any of that? Thanks in advance!!!    
    • Diagnosis and Test Results
      I have been struggling with  symptoms for over a year and had lots of other testing done by my GI.  She did the celiac disease blood test a few weeks ago.  It came back positive for the two genetic markers but my antibodies were negative.  I received the results by phone from the (stupid) nurse who only relayed to me that "your tests showed that you are positive for Celiacs Disease.  you need to go on a gluten free diet and follow up in a few months".  I was so surprised by what she said it didn't even occur to me to call the doctor directly so I took it upon myself to research the disease and going on a strict  gluten free diet.  The first two weeks were horrible!  EVERYTHING I ate gave me diarrhea.  After two weeks, I started to feel better but anytime I inadvertently ate gluten by accident or was cross contaminated, I had horrible diarrhea again.  I spoke with my GI doctor today (I work at the hospital where she works) and she explained the blood results better to me.  (I still haven't expressed my anger about the nurse to her yet...but I will!) It doesn't make sense to me that I have the gene, have been experiencing IMO full blown symptoms (significant weight loss, malnourished, diarrhea, migraines, increased depression/anxiety, etc) but my antibody test was negative.  Could it be lab error?  I asked about an endoscopy and she said we could do it but it still may not confirm the disease.  I've also researched IBS and I don't seem to match up with those symptoms. Part of me wants to know if I have a gluten intolerance or the actual disease.  Either way I'll continue to follow the gluten-free diet but I think it's important to know if I have an autoimmune disease correct?  Or does it? Just looking for some guidance...
    • healthy bread recipe?
      Absolutely, absolutely, absolutely!!!!!!! Your doctor seems to think all her villi have to be completely wiped out for her to be celiac. Like cyclinglady says.... get the records & get a second opinion. BTW, I happen to agree with all the rest she said too but I just wanted to emphasize the second opinion part.  
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,724
    • Most Online
      1,763

    Newest Member
    xwalt
    Joined