How Sick Were You On Gluten?

[amberleigh]

I've been reading lots of posts on this site and feel I am nowhere near what some of you are describing. I've had 2 flare ups in my life (one 6 years ago and one just recently) where I had "chronic diarrhea" for 6-8 weeks. 6 years ago, I was dx'd as having IBS and it eventually went away (or was manageable all this time). I just had my 3rd baby and got sick again and now have been dx'd with celiac but of course am in denial. I'm still waiting on the biopsies from yesterday's scopes, but my GI doc is pretty certain this is what I have.

I just don't believe it though b/c for the last couple weeks, I've felt better. I get sick (diarrhea) a few times in the morning every 2-3 days, but that's it. Wouldn't it be more than that? What were your symptoms?

Oh yeah, and I also have anemia and elevated liver enzymes.

And I have been on Bentyl for the last couple weeks (an antispasmodic drug for IBS).

[Meemsy]

I too have only suffered from a handful of "major" flareups (each lasting several months), other than that I would get the diarrhea (D) a few times a week. Until I went gluten free it never occured to me that it isn't normal to get D that regularly.

The majority of the symptoms that I experienced were always explainable by other things...the migraines (stress), the exhaustion (busy lifestyle), the neuropathy (must just be that bad circulation that runs in the family), the severe anemia (another family trait), the frighteningly low blood pressure (yet another family trait), the funny rash that would appear and disappear (there goes that stress again), the fact that my stomach was constantly gurgling (it's just sensitive).

I think about the only unifying thing between everyone here is that we have Celiac...otherwise I would venture that the ways our disease has shown itself to us is as varied as the personalities here. Please just remember that just because you may not have the most severe of outward symptoms does not mean that you do not have damage where you cannot see it.

All that being said the list of symptoms, that I didn't even know were symptoms, that have disappeared since going gluten-free have boggled my mind. Other than a case of being glutened the D has disappeared as have the: headaches, constant exhaustion, and the gurgling belly. The neuropathy is not nearly as severe as it was before and while I haven't had my blood pressure taken since I was at the doctor's last, I have not "grayed" out when standing up in weeks (would happen all the time before).

Best wishes to you and congratualtions on the newest addition to your family.

[tarnalberry]

I never had that many symptoms, and they were never very severe. Some gurgling, a little gas, some stomach cramping, some fatigue - nothing that stopped me from doing anything I wanted to do. But I felt improved on a gluten-free diet, and don't want osteoporosis, unresolvable anemia, or lymphoma in 30 years, and I do want to be as healthy as possible, so I stay gluten free.

[ravenwoodglass]

I had severe DH and neuro effects since childhood with loss of reflexes, joint and muscle pain, balance, migraines, depression and mood problems etc. My GI problems were really come and go though for 30 years. I was always constipated as a kid but that resolved. When I first started getting D it seemed to be hormonal in nature and was tied to my periods. It took a good 5 years before it was daily and another 5 before the D and pain was more Chrons like than IBS, ie. waking up every night at 2 am with severe cramps, sweating, hot flashes and D that would last till everything was out of my system. By the time I was finally diagnosed, after 15 years of D and lots of other autoimmune problems I was close to death and it was thought I would be wheelchair bound soon and we remodeled to prepare.

I knew nothing about celiac other than the GI problems when I first was diagnosed. It would be almost a year and a half before I found this site. I was positively amazed when so many other 'learn to live with the pain' diagnoses went away.

Everyone is different and symptoms range from like mine to none at all, I in a way am glad I was so severely ill as my return to health was a strong encouragement to my family and others to get tested and/or try the diet.

[cookie22]

I've been reading lots of posts on this site and feel I am nowhere near what some of you are describing. I've had 2 flare ups in my life (one 6 years ago and one just recently) where I had "chronic diarrhea" for 6-8 weeks. 6 years ago, I was dx'd as having IBS and it eventually went away (or was manageable all this time). I just had my 3rd baby and got sick again and now have been dx'd with celiac but of course am in denial. I'm still waiting on the biopsies from yesterday's scopes, but my GI doc is pretty certain this is what I have.

I just don't believe it though b/c for the last couple weeks, I've felt better. I get sick (diarrhea) a few times in the morning every 2-3 days, but that's it. Wouldn't it be more than that? What were your symptoms?

Oh yeah, and I also have anemia and elevated liver enzymes.

And I have been on Bentyl for the last couple weeks (an antispasmodic drug for IBS).

as you can see from the other posts there is sort of a spectrum of celiac symptoms. And, the denial thing is pretty common, it's a big shock!

[Shrudy]

I was just diagnosed about a week ago. Actually relieved to put a name to the symptoms of the chronic D, years of migraines, joint pain, low blood pressure and all-consuming fatigue. NOT relieved to make such a drastic lifestyle change overnight, as it will take some time to get used the whole gluten free/wheat free thing. Of course, it's far better than the alternative. I don't have issues with denial, only with the fact that at the age of 46 it seems so "sudden", as no one ever even mentioned the possibliity of celiac to me before. Actually, I'd never even heard of it. They tested me for everything else under the sun before they even brought celiac up, and even then, the endoscopic biopsy was the very last test. Is this the norm? I wonder.

[psawyer]

I was very sick for several years. Severe D, nausea, vomiting, cramps, gas, bloating, anemia, B12 deficiency, weight loss (went from 200 to 130 pounds), lack of energy, foul moods, hypoglycemia, passing out, and more. Saw too many EMTs and the inside of too many ERs.

Numerous doctors didn't figure it out. My wife discovered some information about celiac disease on a web site about type-1 diabetes, which I also have. I asked my primary doctor at the time (since retired) and he said it is a rare childhood disease, but he would refer me to a GI doctor to be tested. Well, you can figure out the rest. A dramatic improvement within weeks after going gluten-free. I still have osteoporosis as a result of chronic malabsorption--that may never go away, although it has improved a little.

[little d]

I don't know when it all started for me, but I have always been constipated as a kid and the older I got the better i would get about the C and then in my early teens I started with having D with very sever pains I never told my mom, since she tramatized me at a early age with stewed prunes to make me go, it hurt that bad as a kid with the C I would have to force it out and so I would just not go. The older I go my late teens early 20's I noticed more of D and one day I had to make an emergancy stop at McDonalds, it was not pretty, never had that before, I did not know what to do. So instead of going out with my friends later I oppted to stay home because I thought that I came down with a sudden case of the flu. Now I know that is not the case. So the older i got the more I had the D, alternating with C, no other symptoms that I can remember. I was lazy as a kid I never had any energy, so now im thinking that it could have been being tired from eating gluten, I have not a clue. But after my daughter was born 7 almost 8 yrs I noticed more symptoms and the heartburn while I was pregnate continued and worsened the older I got, and so came the stomachburn while eating nausea after never vomiting, my gas pains felt like I was in labor again . I have been sick vomiting in the middle of the night when no one else was I had always thought that was very odd. Now I know that it was the food making me sick. I am getting better with eating gluten free again long story short I have learned my lesson. My GI wanted to give me a label of IBS and I refused him the luxery of that.

donna

[par18]

I too have only suffered from a handful of "major" flareups (each lasting several months), other than that I would get the diarrhea (D) a few times a week. Until I went gluten free it never occured to me that it isn't normal to get D that regularly.

The majority of the symptoms that I experienced were always explainable by other things...the migraines (stress), the exhaustion (busy lifestyle), the neuropathy (must just be that bad circulation that runs in the family), the severe anemia (another family trait), the frighteningly low blood pressure (yet another family trait), the funny rash that would appear and disappear (there goes that stress again), the fact that my stomach was constantly gurgling (it's just sensitive).

I think about the only unifying thing between everyone here is that we have Celiac...otherwise I would venture that the ways our disease has shown itself to us is as varied as the personalities here. Please just remember that just because you may not have the most severe of outward symptoms does not mean that you do not have damage where you cannot see it.

All that being said the list of symptoms, that I didn't even know were symptoms, that have disappeared since going gluten-free have boggled my mind. Other than a case of being glutened the D has disappeared as have the: headaches, constant exhaustion, and the gurgling belly. The neuropathy is not nearly as severe as it was before and while I haven't had my blood pressure taken since I was at the doctor's last, I have not "grayed" out when standing up in weeks (would happen all the time before).

Best wishes to you and congratualtions on the newest addition to your family.

Hi,

The very first paragraph of your post summed up my observation of my symptoms. I really thought everyone got D every now and then. Well I found out on the second day of the diet that the D I had for the previous 8-10 years is not normal. From that point over 2 years ago I have not had a single epispde of the dreaded D. The ability of the body in some people to respond and recover quickly is one of the reasons why diagnosing Celiac is so difficult. Say for instance you had chronic D for a week and then all of the sudden you stopped eating gluten accidentally. In my case I was not a big bread or pasta eater so there were times when I might go a couple of days without. My "D" would stop and I would just chalk it up to a bug. However it always came back. Well toward the end of my pre-diagnosis I was losing weight so rapidly that I would eat more and more bread trying to gain it back. This in hindsight was the worst thing I could have done. I did not know it at the time. I had my last piece of gluten the day I got the call with my Dx through biopsy. The next day I had D for the last time. For me it was one last cleanout! I hope it is the last time I ever get it as I have had enough to last me the rest of my life. To me it is the ultimate reason never to cheat on the diet. Getting back to the question that started this thread I only can add that I did not have D every day or all day but it would just keep coming back over and over. I was never in any real pain but was basically "wasting away" right before my eyes. I had what were called the classic symptoms of bloating,gas, and D. The only other condition that disappeared with the diet was reflux and that surprised me as well.

Tom

[zarfkitty]

Before I identified gluten as the source of my health issues, I considered myself pretty healthy. I just thought my issues were "normal for me." As they slowly escalated, my husband kept pointing out that it just wasn't normal to have X number of illnesses Y percent of the time.

If I hadn't stumbled on a magazine article about celiac disease at my chiropractor's office, I would have "lived with it" a whole lot longer without thinking much about it!!

I did have one "bad attack" about 4 years ago. They took out my gallbladder. I had another "attack" 2 years prior to that. They never found anything wrong after some really expensive tests.

After four weeks on the diet, a bunch of irritating symptoms disappeared that I never would have even considered "symptoms" before. Like bleeding gums. You might not know how sick you really are until you're on the diet.

[little d]

Hi,

The very first paragraph of your post summed up my observation of my symptoms. I really thought everyone got D every now and then. Well I found out on the second day of the diet that the D I had for the previous 8-10 years is not normal. From that point over 2 years ago I have not had a single epispde of the dreaded D. The ability of the body in some people to respond and recover quickly is one of the reasons why diagnosing Celiac is so difficult. Say for instance you had chronic D for a week and then all of the sudden you stopped eating gluten accidentally. In my case I was not a big bread or pasta eater so there were times when I might go a couple of days without. My "D" would stop and I would just chalk it up to a bug. However it always came back. Well toward the end of my pre-diagnosis I was losing weight so rapidly that I would eat more and more bread trying to gain it back. This in hindsight was the worst thing I could have done. I did not know it at the time. I had my last piece of gluten the day I got the call with my Dx through biopsy. The next day I had D for the last time. For me it was one last cleanout! I hope it is the last time I ever get it as I have had enough to last me the rest of my life. To me it is the ultimate reason never to cheat on the diet. Getting back to the question that started this thread I only can add that I did not have D every day or all day but it would just keep coming back over and over. I was never in any real pain but was basically "wasting away" right before my eyes. I had what were called the classic symptoms of bloating,gas, and D. The only other condition that disappeared with the diet was reflux and that surprised me as well.

Tom

When I went gluten free last year and I no symptoms I thought I'm not normal I have no D and it was so easy to go poo I thought no pain when I went I had in a sense to relearn myself that everything was ok with me. and I am now accepting that I don't have an offical diagnoses that it is ok. I have struggled with the lack of diagnoses. I guess that it took for my family doc who was upfront with me even from the very beginning and said he had not a clue about the dieseas and told me to keep with the diet if it is working, so I guess that is what I needed because I have been good with my diet since then for a month now and so far have lost 7lbs, it is ok for me because i'm overweight.

donna

donna

[Guest j_mommy]

I was the same way...it never occuresd to me that having teh big d was abnormal. I had no idea what celiac was before I was dx'd. I had been this way my whole life. I was fatigued, had some stomach cramping(which I didn't know until later was when I binged on bread or rolls) and the big D.

I feel soooo much better. I have a ton more energy. My biggest concern now is that my son will get it or not. He's 2 and has already been tested once. But he's starting to have sympotms!

Good Luck. It does get easier and more managable. just resist the urge to cheat and you may want to have your children tested!

[Guest Doll]

I was sick enough that I probably would have died in a short period of time if I was not dx'd. I had literally every symptom in the book. Trouble walking, mouth sores, bone pain, weight loss, diarrhea, low blood pressure, panic attacks, severe suicidal depression, muscle spasms, dizziness, shooting pains in my arms and legs, trouble talking, severe bruising all over my legs, SEVERE fatigue, elevated liver enzymes (I was told to stop eating red meat ) the list goes on and on like a horror story. One of the most dangerous symptoms fo me was severe (seizure and coma level) sudden drops in my blood sugar. I couldn't keep it at a safe level. I still get this when glutened.

In short, I was very, very, sick.

[little d]

I was sick enough that I probably would have died in a short period of time if I was not dx'd. I had literally every symptom in the book. Trouble walking, mouth sores, bone pain, weight loss, diarrhea, low blood pressure, panic attacks, severe suicidal depression, muscle spasms, dizziness, shooting pains in my arms and legs, trouble talking, severe bruising all over my legs, SEVERE fatigue, elevated liver enzymes (I was told to stop eating red meat ) the list goes on and on like a horror story. One of the most dangerous symptoms fo me was severe (seizure and coma level) sudden drops in my blood sugar. I couldn't keep it at a safe level. I still get this when glutened.

In short, I was very, very, sick.

Doll, I have no idea how you coped, this is why sometimes I feel guilty for even being here on this site because I am not this sick ya I get all of these symptoms but not to your degree. I am counting my blessings

donna

[Guest Doll]

Doll, I have no idea how you coped, this is why sometimes I feel guilty for even being here on this site because I am not this sick ya I get all of these symptoms but not to your degree. I am counting my blessings

donna

Don't feel guilty, feel better! It's all relative. I bet you suffered quite a bit too. I am glad you feel better as well!

I count my blessings too! Around the time I developed my Celiac symptoms, I was really in a tough spot.

I was raised by my grandparents, and I moved out on my own at age 17 after my grandfather developed bladder cancer. It was just too hard to live my life under that roof and have to watch him suffer. I had to work full time and finish high school at the same time. With my health coditions, it was tough, and I got burnt out. But I did well in school, and kept trying to save enough to support myself so I could go to university. I worked really hard, but was never able to get ahead.

I bought my own place (condo) when I was just over 20. I worked 21 days straight at times to make sure I could get my mortgage approved. I did this so I could return to school, because my mortgage would be cheaper than rent. I knew I couldn't work full-time and go to school like most people without making my blood sugars go out of whack (I'm "brittle"), so I had to come up with a plan. I bought my condo with the intent of returning to school. Unfortunately, just after that was when I became "mysteriously" ill with MS-like symptoms. I began to miss work, my bills pilled up, I struggled to afford food, school was looking further and further away. I got sicker and sicker, and I was terrified of what might happen to me. The person I was seeing on and off again couldn't deal with my health problems (although he was very caring at first) and began to date someone else. I would keep him on the phone for hours when I felt like I was going to pass out, because I wanted someone to call for help if I did.

I managed to get through a few more months of this. I got an insulin pump through sponsorship ($6500), which helped (but not eliminated) my severe low blood sugar attacks to some extent. This saved my life. At this point, I still didn't have notable gastro symptoms, so I never thought I had Celiac.

A few months after that, I was introduced to my now fiance. He is the most amazing man I have ever met. He has been supportive of my needs for over 2 years now. About 1 month *after* I met my guy (how's that for timing), my symptoms *exploded* in severity. I had severe low blood sugars every day (I would eat an entire box of cookies and my levels wouldn't budge...now I know why ), I went from a size 7-8 to a size 4 and looked liked I had cancer, the big D became daily, I would lay awake at night crying from back pain, my joints ached. I asked to be tested for Addison's and Celiac. I got my offcial dx about 3 weeks after that. My fiance was relieved that I wasn't going to kick the bucket yet. He took me shopping for gluten-free food, and to this day still eats gluten-free with me. I am very lucky, and very thankful. He has been great. His family too! They make me my own Turkey with gluten-free spices at Christmas! Thanks God! Because of my fiance, I was also able to return to school.

As I always say, could be better, could be worse... I thank God every day.

[little d]

Don't feel guilty, feel better! It's all relative. I bet you suffered quite a bit too. I am glad you feel better as well!

I count my blessings too! Around the time I developed my Celiac symptoms, I was really in a tough spot.

I was raised by my grandparents, and I moved out on my own at age 17 after my grandfather developed bladder cancer. It was just too hard to live my life under that roof and have to watch him suffer. I had to work full time and finish high school at the same time. With my health coditions, it was tough, and I got burnt out. But I did well in school, and kept trying to save enough to support myself so I could go to university. I worked really hard, but was never able to get ahead.

I bought my own place (condo) when I was just over 20. I worked 21 days straight at times to make sure I could get my mortgage approved. I did this so I could return to school, because my mortgage would be cheaper than rent. I knew I couldn't work full-time and go to school like most people without making my blood sugars go out of whack (I'm "brittle"), so I had to come up with a plan. I bought my condo with the intent of returning to school. Unfortunately, just after that was when I became "mysteriously" ill with MS-like symptoms. I began to miss work, my bills pilled up, I struggled to afford food, school was looking further and further away. I got sicker and sicker, and I was terrified of what might happen to me. The person I was seeing on and off again couldn't deal with my health problems (although he was very caring at first) and began to date someone else. I would keep him on the phone for hours when I felt like I was going to pass out, because I wanted someone to call for help if I did.

I managed to get through a few more months of this. I got an insulin pump through sponsorship ($6500), which helped (but not eliminated) my severe low blood sugar attacks to some extent. This saved my life. At this point, I still didn't have notable gastro symptoms, so I never thought I had Celiac.

A few months after that, I was introduced to my now fiance. He is the most amazing man I have ever met. He has been supportive of my needs for over 2 years now. About 1 month *after* I met my guy (how's that for timing), my symptoms *exploded* in severity. I had severe low blood sugars every day (I would eat an entire box of cookies and my levels wouldn't budge...now I know why ), I went from a size 7-8 to a size 4 and looked liked I had cancer, the big D became daily, I would lay awake at night crying from back pain, my joints ached. I asked to be tested for Addison's and Celiac. I got my offcial dx about 3 weeks after that. My fiance was relieved that I wasn't going to kick the bucket yet. He took me shopping for gluten-free food, and to this day still eats gluten-free with me. I am very lucky, and very thankful. He has been great. His family too! They make me my own Turkey with gluten-free spices at Christmas! Thanks God! Because of my fiance, I was also able to return to school.

As I always say, could be better, could be worse... I thank God every day.

Yes I did suffer but never knew anything was wrong with me but with the help of my sister we self diagnosed ourselves. Sounds like God has given you someone special your Gardian Angle for protecting you. My size went the oppisite to you I went from size 8 at 120lbs to 12 almost 14 at 160. Very quickly I could never loose the harder I tried the more I would gain, I you look at the weight lose thread that I pretty much how I ate but with gluten foods and could not lose, but I am now 152 and losing more, so Im doing something right. And I do Thank God for not being as sick as some others and figureing out for myself what the heck was going on with me. And yes I do feel better eating gluten free.

donna

[lovegrov]

How sick was I?

In the hospital for 11 days and missed 10 weeks of work because I was so anemic I couldn't even walk by myself. Talking on the phone required more energy than I had. I ran fevers up to 105 and fevers over 100 continued for two months. Night sweats so bad I soaked the bed and chills so bad I got muscle cramps (doctors thought I had non-Hodgkins lymphoma even after they found the celiac). My joints ached so badly that I took large doses of Advil for many months. When I returned to work it was only part time for a while. It was about 10 months before I felt "normal" again.

I was VERY sick, possibly dying when I was diagnosed. Oh, and although I had lots of very toxic gas, the kind that could clear a room, I had little diarrhea.

richard

[ravenwoodglass]

One thing that really struck me about a lot of these replies is how many of us thought that D was a normal part of living. I know I bought into it for years with my 'I Be Stupid' diagnosis. I still wish Immodium was a prescription med, maybe if our doctors listened and knew how much OTC meds we really were taking to control our 'normal' D we could get diagnosed a bit sooner. Many doctors I believe think we exagerate symptoms when what many do is the opposite. I did not know until months after diagnosis that waking up at night with D is not IBS, something my regular doctor never said, he just pushed more antidepressants and valium.

[SchnauzerMom]

My number one symptom was acid stomach. It felt like a hole was being burned in my stomach. A close 2nd was IBS, alternating constipation and diarrhea. Lots of gas too. I've been gluten free for 2 weeks now and most of that has cleared up. The intestines are still a little twitchy but are in the process of calming down.

[Lizking531]

So.....12 BM's per day isn't normal? Sweating, bloating, anger, and explosive gas after meals isn't either

I kept up on the doc, so far my testing has saidy otherwise, but a couple days ago I started to try gluten-free, since I could "safely" eat corn chips and cheese or corn tortillas and meat. So I tried to keep up the gluten-free & so far - so awesome! I've had a lump on my left side over my kidney for weeks - GI doc said that it was probably musculo-skeletal and that it wasn't his concern - Today, its gone! and no back pain or gas or bloating! I used a urinal at work and have never been so proud!

"probably just IBS" yeah right. I'm staying gluten free at least until my next GI appt on 9/11 (weird) I'll be interested to hear what he has to say.

Jewish Hospital (KY) seems ok, & in all fairness he did do the biopsy and blood. Although I haven't seen the actual test results on paper, they said they tested and I was negative for celiac. I dunno, so far this gluten-free is working wonders for me

Thanks ya'll!! I've had many questions answered on here in the last couple days

[LJW]

I've been reading lots of posts on this site and feel I am nowhere near what some of you are describing. I've had 2 flare ups in my life (one 6 years ago and one just recently) where I had "chronic diarrhea" for 6-8 weeks. 6 years ago, I was dx'd as having IBS and it eventually went away (or was manageable all this time). I just had my 3rd baby and got sick again and now have been dx'd with celiac but of course am in denial. I'm still waiting on the biopsies from yesterday's scopes, but my GI doc is pretty certain this is what I have.

I just don't believe it though b/c for the last couple weeks, I've felt better. I get sick (diarrhea) a few times in the morning every 2-3 days, but that's it. Wouldn't it be more than that? What were your symptoms?

Oh yeah, and I also have anemia and elevated liver enzymes.

And I have been on Bentyl for the last couple weeks (an antispasmodic drug for IBS).

I found out two years ago that I had a severe gluten allergy. I had chronic diarrhea that kept getting worse. My doctors kept telling me it was IBS. It became unmanageable to the point I was having "accidents" everyday without warning. I was terrified to leave home. Since I became gluten free my life has not been the same. I feel grateful that I finally found a doctor who would listen to me and not just run more tests. You have some good days but wouldn't you like all your days to be good!! Good Luck

[Ed-G]

How can I describe my symptoms? It depends on how old I was. In my first two years, it seemed that I had almost everything -- D, weight loss, bloating and distended stomach.....everyone, including my pediatrician, thought I was was going to die. Later, when I was older, I was still terribly underweight, since wheat was reintroduced into my diet. I also developed enough red pimples on my back and sides (some of which I still have), that I was called "acne back" at times. While I do remember fatty, floating stools and occasional diahrrea, I didn't pay much attention to it until my late 30s/ 40s when breaks if D became much more common. It was then when I began to take a hard look at a part of my medical history that I pretty much trivialized, and started began a gluten free diet.

Ed in MD

[elye]

Now, to the other end of the spectrum...

It actually is miraculous that I was diagnosed with celiac at all. I had NO symptoms, other than low iron. I owe it to my very with-it family doctor who, because of the type one diabetes, may have suspected something autoimmune and sent me for the celiac panel. I probably can credit her for saving my life, as I would have continued unknowingly abusing my body with gluten indefinitely, and ended up dying of gastrointestinal lymphoma. I'm very lucky!

[ryebaby0]

My husband was dx two years ago at the age of 42, only on the basis of blood tests we all had after our son was catastrophically ill and dx (eventually) as celiac. DH had very few symptoms -- he thought the occasional D, occasional gassiness was normal (his family has a wide spectrum of GI issues; none have tested postiive for celiac though) and it was a family joke that he could eat all day and stay like a beanpole. But, he went gluten free out of curiosity, and was astonished at how much better he felt. I've known him almost 30 years, and never once thought he was sick -- but now I see how much healthier he is!

[grey]

Add me to the column of people who never really realized that the D was abnormal. In fact, I didn't even know it WAS D until I was dx'd. I thought D was just the explosive stuff and only had that sometimes. I probably have most of the possible celiac symptoms and have had off and on for many many years.

I've had 2 serious flares that put me in the hospital for tests before the current flare (and dx); they never found anything and I had thousands of dollars of tests. I had a lot of fatigue, pain, and serious neuropathy for no apparent reason. I don't think I even mentioned the D, gas, etc because I was really embarassed about it. I still find it hard to talk about my GI system!

The most recent flare - I lost almost 50 lbs, the GI got so bad I finally said something to my md, and my blood tests (liver enzymes, all vitamins and minerals, RBC, WBC) tanked. But until then, I mainly thought I just had a lot of smaller things that didn't connect. I also put a lot on my allergies - which are now mostly gone gluten-free - but most of all STRESS. Nearly everything I blamed on stress, so I kept saying it'll be better when I get a break, but it kept getting worse instead. I grew up as an athlete and I can handle a lot of physcial pain and fatigue before I'll complain or worry about it. I covered it all pretty well and people didn't realize how sick I was until the very end before the dx-and I didn't look 'sick'. I think that slowed my dx a lot - most things just never seemed bad enough and I didn't want to go through more expensive tests. Thank goodness my md thought to test celiac. I was mainly worried about my B12 levels and my endless migraines. I was in really bad shape when I was dx'd, far worse than I knew at first. Could have knocked me over with a feather when I got the dx!