New To Forum! It's Amazing How Our Bodies 'remind' Us To Slow Down & Treat Them Appropriately!

[TryingtobehealthyinMass]

Hello everyone!

As I mentioned in the subject line, I'm new to the forum & happy to find some kindred spirits!

I am gluten intolerant - diagnosed through diet elimination & extensive diet analysis w/my Naturopath, three years ago. Up to that point & starting as a baby, I was a chronic sufferer of constipation, or as I not-so-lovingly called it: "my rock formations". With lifelong constipation, came frequent lower, left quadrant abdominal pain, gas, bloating, anal fissures/hemorroids, bloody stool & the ever embarrassing clogging of toilets! Aside from that, I also endured lifelong cyclic depressive & anxiety-ridden episodes, that at times, left me absolutely debilitated, not able to leave my bed. I also suffered from various skin issues: whether it is weird, 'dry', patchy looking circles anywhere on my body, severely itching plagues on the base of my scalp or dry, raised, flaky skin around my hairline, eyebrows & chin. And, lastly, joint pain that gets worst when glutened; although, this was more of an adult onset symptom. I also have been diagnosed w/degenerative disc disease - unclear if this related, but worth noting.

Finally in my mid-twenties, I said ENOUGH & wanted answers to what was causing all the above. So, I did the following:

1.) went to gastroenterologist for my constipation (who did do a colonoscopy & luckily found nothing but scar tissue from years of 'rock formations', but would/could not do testing for celiacs because I didn't have chronic diarrhea. He prescribed some sort of sorbitol mix to soften my stool. In the end, he passed me off as an OCD-ridden, twenty-something female who needed to drink more WATER & have more FIBER.... UGHHH! I could have strangled that man!).

2.) Underwent exploratory abdominal surgery through my OB/GYN due to my chronic, lower left quadrant pain - they wanted to rule out any potential endometriosis, ovarian cysts, etc . They didn't find evidence of any endometriosis, but found extensive adhesions & found that my lower, left area of my large intestine was adhered to my abdominal cavity, as well as a benign cyst on my uterus. SO, could the adhesions be related to gluten intolerance? I don't know... Needless to say, even after they removed the cyst & 'released' my colon, I was still having pains.

3.) Underwent nerve conduction testing because I was experiencing some numbing/tingling in my hands... everything was 'normal'. However, I did get an MRI for neck & back pain & they concluded that I did have degenerative disc disease... their suggestion that I do strength exercises to build up my spinal column muscles & I may not be able to have children w/out excruciating pain... good to hear...

4.) Underwent YEARS of psychotherapy through various practitioners, even Psychiatrists who put me on several different types of medications - some helpful in getting me out of my depression, but none really helped my anxiety. Finally, I'd had enough of the side effects. The one that became the last straw for me was night sweats. I mean, so much so that my sheets had my exact body outline in sweat! I've got the pictures to prove it! When I mentioned this side effect to my doctor, he just wanted to prescribe ANOTHER medication to counterbalance it!!

That was IT for me... done! Had enough of 'conventional' medicine! I knew in my heart of hearts that something more fundamental was wrong. Something essential & basic was being overlooked; I was too young to be experiencing all these issues. Actually, nobody regardless of age should ever have to experience these symptoms. So, I went to a Naturopath; a pregnant co-worker of mine suggested her as she was seeing her for acupuncture therapy. I took a shot & never looked back! She took my myriad of symptoms & took a holistic approach by looking at the WHOLE picture; could these be all related? One of various things she did was analyze a very detailed food diary, which also charted my symptoms... NONE of the MD's did this. Through an elimination diet & a cleansing, my bowel habits improved drastically! I was no longer clogging toilets & not experiencing painful defecation! No more avoiding single toilet bathrooms in public for fear of clogging them!!!! W/in a couple months my anxiety & depression faded, my painful joints were subsiding & my skin started to clear up. As we added things back to my diet, we found I also had a corn sensitivity - itchy, cloudy vision, scalp irritation. Dairy products (milk, icecream & soft cheeses in particular) also seemed to give me acne, so I backed off of those as well.

My life was truly transformed... I became a completely different person. All of a sudden I had the energy to become physically active - picked up surfing & snowboarding @ age 28/29 & fell in love w/the sports, biking to/from work, exercising in the gym on a regular basis (wanted to keep up on my spinal column strength building exercises)!

Eventually, life landed me where I am today, on the East Coast... I'm a West Coaster by heart: born & raised, but I was ready for a change & challenge. So, I packed my car, drove across the country & here I am. Six months later, after much stress (finding a job, starting school, getting used to East Coast Culture , finding friends), I became lax on my eating habits... sneaking bits of bread, beer, cookies, pasta, breaded anything, even cereal... you name it, I probably had it! Well, here I am... w/my bloated belly, rock formations, exhaustion, depression, hurting joints, skin rashes; aka Super Sexy! But like I said before, it's amazing how our bodies remind us when we get off track. While, I'm not in the best shape now, at least I know what to do! Get back on track & know that this 'fog' will go away! Because, those glorious holiday treats are just not worth feeling like this!

Ok, now that I've told you my life story, I look forward to being an active member to the forum!

Have a great weekend everyone!

[YoloGx]

Welcome to the board! Am so glad you know what to do to take care of yourself! Wish I did at your age--though at least I figured out part of it.

Bea

[Swimmr]

Hello everyone!

As I mentioned in the subject line, I'm new to the forum & happy to find some kindred spirits!

I am gluten intolerant - diagnosed through diet elimination & extensive diet analysis w/my Naturopath, three years ago. Up to that point & starting as a baby, I was a chronic sufferer of constipation, or as I not-so-lovingly called it: "my rock formations". With lifelong constipation, came frequent lower, left quadrant abdominal pain, gas, bloating, anal fissures/hemorroids, bloody stool & the ever embarrassing clogging of toilets! Aside from that, I also endured lifelong cyclic depressive & anxiety-ridden episodes, that at times, left me absolutely debilitated, not able to leave my bed. I also suffered from various skin issues: whether it is weird, 'dry', patchy looking circles anywhere on my body, severely itching plagues on the base of my scalp or dry, raised, flaky skin around my hairline, eyebrows & chin. And, lastly, joint pain that gets worst when glutened; although, this was more of an adult onset symptom. I also have been diagnosed w/degenerative disc disease - unclear if this related, but worth noting.

Finally in my mid-twenties, I said ENOUGH & wanted answers to what was causing all the above. So, I did the following:

1.) went to gastroenterologist for my constipation (who did do a colonoscopy & luckily found nothing but scar tissue from years of 'rock formations', but would/could not do testing for celiacs because I didn't have chronic diarrhea. He prescribed some sort of sorbitol mix to soften my stool. In the end, he passed me off as an OCD-ridden, twenty-something female who needed to drink more WATER & have more FIBER.... UGHHH! I could have strangled that man!).

2.) Underwent exploratory abdominal surgery through my OB/GYN due to my chronic, lower left quadrant pain - they wanted to rule out any potential endometriosis, ovarian cysts, etc . They didn't find evidence of any endometriosis, but found extensive adhesions & found that my lower, left area of my large intestine was adhered to my abdominal cavity, as well as a benign cyst on my uterus. SO, could the adhesions be related to gluten intolerance? I don't know... Needless to say, even after they removed the cyst & 'released' my colon, I was still having pains.

3.) Underwent nerve conduction testing because I was experiencing some numbing/tingling in my hands... everything was 'normal'. However, I did get an MRI for neck & back pain & they concluded that I did have degenerative disc disease... their suggestion that I do strength exercises to build up my spinal column muscles & I may not be able to have children w/out excruciating pain... good to hear...

4.) Underwent YEARS of psychotherapy through various practitioners, even Psychiatrists who put me on several different types of medications - some helpful in getting me out of my depression, but none really helped my anxiety. Finally, I'd had enough of the side effects. The one that became the last straw for me was night sweats. I mean, so much so that my sheets had my exact body outline in sweat! I've got the pictures to prove it! When I mentioned this side effect to my doctor, he just wanted to prescribe ANOTHER medication to counterbalance it!!

That was IT for me... done! Had enough of 'conventional' medicine! I knew in my heart of hearts that something more fundamental was wrong. Something essential & basic was being overlooked; I was too young to be experiencing all these issues. Actually, nobody regardless of age should ever have to experience these symptoms. So, I went to a Naturopath; a pregnant co-worker of mine suggested her as she was seeing her for acupuncture therapy. I took a shot & never looked back! She took my myriad of symptoms & took a holistic approach by looking at the WHOLE picture; could these be all related? One of various things she did was analyze a very detailed food diary, which also charted my symptoms... NONE of the MD's did this. Through an elimination diet & a cleansing, my bowel habits improved drastically! I was no longer clogging toilets & not experiencing painful defecation! No more avoiding single toilet bathrooms in public for fear of clogging them!!!! W/in a couple months my anxiety & depression faded, my painful joints were subsiding & my skin started to clear up. As we added things back to my diet, we found I also had a corn sensitivity - itchy, cloudy vision, scalp irritation. Dairy products (milk, icecream & soft cheeses in particular) also seemed to give me acne, so I backed off of those as well.

My life was truly transformed... I became a completely different person. All of a sudden I had the energy to become physically active - picked up surfing & snowboarding @ age 28/29 & fell in love w/the sports, biking to/from work, exercising in the gym on a regular basis (wanted to keep up on my spinal column strength building exercises)!

Eventually, life landed me where I am today, on the East Coast... I'm a West Coaster by heart: born & raised, but I was ready for a change & challenge. So, I packed my car, drove across the country & here I am. Six months later, after much stress (finding a job, starting school, getting used to East Coast Culture , finding friends), I became lax on my eating habits... sneaking bits of bread, beer, cookies, pasta, breaded anything, even cereal... you name it, I probably had it! Well, here I am... w/my bloated belly, rock formations, exhaustion, depression, hurting joints, skin rashes; aka Super Sexy! But like I said before, it's amazing how our bodies remind us when we get off track. While, I'm not in the best shape now, at least I know what to do! Get back on track & know that this 'fog' will go away! Because, those glorious holiday treats are just not worth feeling like this!

Ok, now that I've told you my life story, I look forward to being an active member to the forum!

Have a great weekend everyone!

Awesome! Welcome!

Most importantly, welcome to the EC! I'm in NC. I really love the east coast!

So how old are you now?

[TryingtobehealthyinMass]

Thanks the welcome, yolo! I do know what needs to happen... just no more slipping!!! Uggghhh, this feeling of exhaustion, fogginess & 'rock formations' is NOT fun. I can't believe this is what the 'old me' was putting up with!

[YoloGx]

Thanks the welcome, yolo! I do know what needs to happen... just no more slipping!!! Uggghhh, this feeling of exhaustion, fogginess & 'rock formations' is NOT fun. I can't believe this is what the 'old me' was putting up with!

It takes time to convince oneself when the culture is so different to your needs. But you have done the work and know what to do. That is a blessing!

I honestly wonder what the line is between celiac and severe gluten intolerance. The more I learn the less difference there seems to be. Do you also have to avoid cross contamination of gluten for instance?

I too get the constipation. Many with celiac do actually. And some have no obvious intestinal difficulties; it just manifests in other ways. Its very dangerous to ignore nevertheless since it can lead to cancer or other degenerative or auto immune conditions. For myself it really messed up my kidneys and nervous system plus gave me similar adhesions you talked about. I didn't get surgery however. I ended up using herbs to help me out of the soup.

Bea

[TryingtobehealthyinMass]

HI Swimmr! Thanks for the welcome! And yes, the East Coast is growing on me About three months into moving here I underwent some severe culture shock... it almost felt like I was surrounded by aliens! Maybe that's why I had as much beer as I did... just joking! But then, I got over myself & realized I needed to give my new home a chance & stop comparing it to back 'home'! So, once the semester ends, I'm looking forward to doing some winter New England activities! And, to answer your question, I'm 31.

[TryingtobehealthyinMass]

It takes time to convince oneself when the culture is so different to your needs. But you have done the work and know what to do. That is a blessing!

Thanks Bea! I do feel EXTREMELY lucky & blessed to have found out all the info so early in life, but it wasn't w/out its consequences. I'm convinced that my relentless pursuit of health at least had some part to play in the break-up of my six year relationship... if I wasn't constantly tired, I was depressed & when I did have energy for anything it was to do the bare minimum like go to work or research my illnesses. It was all-consuming. But, things happen for a reason & I'm forever grateful for where I am now.

I honestly wonder what the line is between celiac and severe gluten intolerance. The more I learn the less difference there seems to be. Do you also have to avoid cross contamination of gluten for instance?

You know, I never considered the cross contamination aspect, until today. For example, all the roommates I've had since my diagnosis, prepared/consumed gluten products & it didn't seem to affect me. I even routinely prepared gluten products, for holidays or luncheons, & didn't seem to have a reaction... but then again, I may have & just passed it off as something else. I'm going to pay closer attention to this & considering I work in a grocery store, that may get interesting...

I too get the constipation. Many with celiac do actually. And some have no obvious intestinal difficulties; it just manifests in other ways. Its very dangerous to ignore nevertheless since it can lead to cancer or other degenerative or auto immune conditions. For myself it really messed up my kidneys and nervous system plus gave me similar adhesions you talked about. I didn't get surgery however. I ended up using herbs to help me out of the soup.

Bea

Thanks again Bea!!

[YoloGx]

With cross contamination (known on the boards here as CC) you don't know if you are affected by it unless you go off all trace gluten. This means even toothpaste, old wooden cutting boards, spoons and bowls, toasters, shampoo, and of course the various glutenous additives in things that aren't always so obvious. There is a list here on celiac.com that you can look at. For someone who is sensitive, its important to always wash your hands before eating in case they might have a speck of gluten on them from shaking someone's hand or who knows what.

The fact you have done so much better while ignoring such concerns makes it more likely that it won't apply to you. However it would be a good experiment--especially since not all cases of celiac are actually discovered by an endoscopy.

When I was your age I did do a lot better than I had been by being off most gluten--in fact I saved my life by being off it for the most part since my kidneys were rapidly deteriorating beforehand not to speak of my skin etc. I thought what I had was an allergy. However it wasn't. Gluten continued to gradually undermine my health. It was only fairly recently that I discovered I actually have celiac and had been diagnosed for it when I was an infant. My mother didn't want to "alarm" me with this piece of information until the spring before last. She thought I had "grown out" of it by age four. Such are the ironies of fate.

So what happened? I went off all trace gluten. At first when I saw what people were saying about it here on celiac.com I thought they were a little nuts. But then I started getting sick with diarrhea each time after spending time with my boyfriend who liked his whiskey. I was getting ill from kissing him even though his whiskey was distilled! This was me who never got diarrhea! There was usually a 24 hour delay however. Then I started getting ill the few times I went to restaurants eating food at places that previously seemed to be just fine--but now weren't also due to either trace gluten or CC!

Some would say why bother! However the bottom line was that when I wasn't exposed to the gluten at all I felt so much better than I had in years. Many of my aches and pains and restless leg syndrome and anxiety attacks completely went away or were greatly reduced. I also stopped getting the constant colds and flu etc. I used to always get unless (and a big unless) I got "glutened." Plus as I said, it greatly reduced my chances of getting cancer or some other auto immune disease.

So, yes, experiment sometime and see if you need to be careful like that or not. Am hoping you don't since it really is a pain in the ass when traveling or going to restaurants or dealing with boyfriends etc. However the health benefits if needed are worth it.

Bea