Mind Blown Help?

[Ambarnha]

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

[dilettantesteph]

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?

[Ambarnha]

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!

[nvsmom]

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.  

[GFinDC]

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

Newbie Info 101
https://www.celiac.com/forums/topic/91878-newbie-info-101/

[Ambarnha]

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!

[nvsmom]

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.

[Ambarnha]

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

[nvsmom]

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.

[Ambarnha]

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?

[iloathegluten]

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!

[nvsmom]

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.

[Juliebove]

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.

[1desperateladysaved]

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

[GFinDC]

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.

[Ambarnha]

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!!

[Ambarnha]

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?

 

 

 

[Ambarnha]

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!!

[GFinDC]

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!