Trying To Understand, So Forgive Me!

[Guest DanceswithWolves]

For many months now I have been reading many of the posts on this site. From the information I gathered, Celiac Disease can be life-altering for most of you.

I'm staring at my hospital bill totalling over $300 just for the lab work. According to all three of my doctors I do not have Celiac Disease. I was told that my stool sample indicates fat absorbtion thus if I had celiac disease, this number would show no fat absorbtion.

I was also told I have Gilbert's Syndrome. This causes a slight yellowing of the skin and can be linked to intestinal problems. My bilirubin numbers were slightly high.

My Gastro even said he has it (yeah, ok) and there's nothing you can do about it. It's not life-threatening. Anyone else told this? My mother agreed to ask her doctor about getting tested for celiac disease. Have to ask my Dad, too.

No comment was made about the chills I still get in my hands and feet but I guess it's just lack of body fat that makes me cold. Oops, there I go again, playing doctor.

I was told I need to be consuming roughly 3000 calories a day. Wow.

I did notice for the last three days when I had a #2 move that it appeared a little red in some areas. I wasn't sure if this was blood or perhaps my breakfast cereal (which has strawberries in it) didn't break down enough.

The last time I went, there was no trace of it.

Occasionally, I go into this horrible allergy attacks consisting of pressure behind my eyes and intense nasal congestion . Usually this happens about an hour or two after I eat. I am unsure if it is just the location I live or the workplace.

Scalp itches and sometimes my ears. My mother told me that when I was born she was told by the doctors to wipe down my crib and bedroom walls every day but she was never told anything else. Just that I had "allergies".

I am now at a steady 125lbs. after being 120 for almost 6 months. I have gone back to eating anything and everything as instructed by my gastro/doc. I still look lean and have lost much muscle mass. I work out but it doesn't seem to do anything but make me tired. I am currently taking Prozac and this seems to have helped my outlook and attitude.

Now, I understand that many of you never feel well...so how do you cope with your jobs every day?

How do you eat during your lunch break?

Is celiac disease really affecting your job performance?

Everyone seems to always say "I get sick when I have Gluten" but nobody really explains what the symptoms are.

This is what I find hard to understand.

We all seem to curse our doctors when they don't agree with us, but yet we didn't go to med school. How can some of you be so sure that your doctor is wrong with their diagnosis or opinion?

It just seems like there are too many people on here that are pointing all their fingers at Celiac when it could be other things?

Brain fog?-couldn't that just be Stress? Studies indicate that when you are under heavy amounts of stress the brain releases certain chemicals throughout your body to prepare and react to the situation.

Depression is also a big candidate for Celiac.

I'm just playing devil's advocate here. Many people turn to this website for help, including myself...we need to let them know that not everything is caused by celiac disease.

[Carriefaith]

Have you been checked for anything else other than celiac disease? If there may be blood in your stool, I would ask to get checked for chron's disease or ulcerative colitis. Also, have you tried eliminating all forms of dairy from your diet, including hidden dairy (chocolate, candy, baked goods, butter)? Dairy can cause a lot of problems if you are intolerant to lactose or especially casein.

I'll try my best to answer some of your questions

Now, I understand that many of you never feel well...so how do you cope with your jobs every day? Is celiac disease really affecting your job performance?

I feel great until I get accidental gluten or dairy. When this happens I still go to work/school and I try and deal with it as best I can while I am there. Once when I was glutened my pain got so bad at university that I had to lock myself in a room until it subsided.

How do you eat during your lunch break?

I eat in a lunch common room or at my desk.

Everyone seems to always say "I get sick when I have Gluten" but nobody really explains what the symptoms are.

When I get glutened I get a ton of symptoms, diarrhea, bloating, gas, mild-severe upper abdominal pain, red spots on my skin, heart palpitations, fatigue, dizziness, brain fog, mild insomnia, floating stool, weight loss (3-4 pounds).

This is what I find hard to understand.

We all seem to curse our doctors when they don't agree with us, but yet we didn't go to med school. How can some of you be so sure that your doctor is wrong with their diagnosis or opinion?

I think it is because some (not all) doctors have the "I don't care attitude" or the "I am so busy that I am just going to say you have IBS without testing you for anything else". Doctors may have went to med school, but they are only human and they do make mistakes and they can get tired and sloppy.

It just seems like there are too many people on here that are pointing all their fingers at Celiac when it could be other things?

I think that all possibilites should be investigated if you are having GI problems.

Hope this helped a bit

[Paul-Bunyon]

If the blood is red, it's new, which means it would most likely be from your lower intestine. If that's the case, you have hemorroids at least.

[Rachel--24]

I don't think everyone here has Celiac Disease....I dont even think I have it. I wanted test results to prove something to me so I had all the tests done (for lots of different conditions/diseases) The only positive test I've ever gotten was from Enterolab indicating an immune response to gluten. I wasnt able to work for 2 years before getting these answers. I'm on the diet 100%, feeling tons better and happily working full time now.

I believe if I kept waiting for the so-called doctors to diagnose me...I probably would have died first. If I dont have celiac but gluten is harming my body just the same then I probably never would have tested positive in a bloodtest or biopsy and of course the doctors would have told me gluten was not making me sick...which was not the case. I think when all else fails (which it did for me) then sometimes we *do* need to take matters into our own hands...and out of the hands of the doctors who were only contributing to my health problems rather than finding a cause.

[Jnkmnky]

I don't think you need to have clinical Celiac to have trouble with Gluten. Have you read the book "Dangerous Grains"? It's at Amazon if you're interested. In the book, they explain how gluten is very difficult for our bodies to break down. That the main reason we're all eating the gluten grains is that they're easy to mass produce and ship around the country thereby avoiding starvation problems in our society. The store shelves are always going to be stocked with ultra cheap gluten products. The "bread basket of America" is proof that we can all eat and survive. But it's a poor grain choice for humans. So we're all ultimately suffering in some small way from this gluten diet...some more than others.

I tested neg for celiac disease and all it's sensitivities as did my two other children. We were tested through Prometheus Labs which is supposed to be very reliable. Once I had the testing done, I removed the gluten grains from our diets... *mostly*. If we go out to dinner, we order what we want. Once a month, I may order a "real" pizza. But for the most part, we are not just "gluten light", we're pretty much "gluten free". My celiac kid is 100% gluten free, of course!

I feel better being gluten free. I was dx a year ago with endometriosis. You, being a guy wouldn't know too much about that one, but let me tell you it hurts like a hell. I was on the floor in public places in a split second when the pain hit. This went on for a year before being dxed. When I went gluten free... I had no more pain. Blissful cycles. I thought I'd cured my problem and ate gluten again for a couple months... Guess what? Pain came back. Crippling, falling to the floor pain. So, I read Dangerous Grains, considered the difficulty of going gluten-free for an entire family, had the testing done and went gluten free. No more pain. Not in 5 months. My doctor doesn't think it's possible that endo can be cured on a gluten-free diet.

It makes me laugh. If my cure doesn't come from a pill---- it's not legit?????

I think one of the main problems with doctors and their celiac patients is that there's not enough info being taught to the drs. They are told this is a rare disease and expect never to see a case of it. Only in the last 4 years has the medical community begun to suggest that Celiac is a common disease. Do you know how many drs don't realize this??? Plus, there's no financial gain for ANY pharmeceutical company to develop drugs for this disease. This leads much money AWAY from research into Celiac which contributes to the lack of knowledge. There would be no way to re-coup money spent on research. Money funding research of Celiac Disease has to come from donations, fundraisers like the yearly walks put on by R.O.C.K. There is so much not understood about Celiac. But you know what is known? Celiac is the ONLY autoimmune disease with a KNOWN trigger. The only autoimmune disease with a virtual CURE- avoid gluten. SIMPLE. And with all they sort of know about autoimmune diseases --> that they "run in packs"-- they know that if you aggravate your immune system, you run the risk of developing other, more nasty, non-curable autoimmune diseases. The result of eating this gluten over a few decades while you go undxed is more problems. That's why so many Celiacs tend to have other issues. They were dx too late before their immune systems were damaged. Frankly, I think the gluten causes autoimmune diseases in NON-celiacs as well. Just the permanent state of inflammation over the course of years in a non-celiac is enough to cause immune system disorders in anyone. That's why we're all gluten free in our house.

As for the brain fog- my celiac kid had the brain fog from birth to 3yrs old. We live with the results daily. He is in speech and OT and was held back a year already. The peptides released into your blood through an inflammed, "leaky gut" cause the brain fog. There are too many peptides crossing the brain blood barrier when you have a leaky gut. They circulate in your brain causing an opiate, drug-like effect. That's why kids with autism do better on gluten free/casein free diets. Their guts seem to be extra permeable as well. My head didn't get any clearer going gluten free, I guess I don't have a very leaky gut. Nor do my other two children. However, my celiac kid was seriously leaky. That's the brain fog. My celiac kid was glutened once right near christmas and spent almost a whole week sitting around DROOLING. Nearly totally non-verbal. The change in him was undeniable. He was practically catatonic. That's what gluten CAN DO to some people. That's not just stress. That's an observable malfunction of your system.

[ianm]

Now, I understand that many of you never feel well...so how do you cope with your jobs every day?

How do you eat during your lunch break?

Is celiac disease really affecting your job performance?

Everyone seems to always say "I get sick when I have Gluten" but nobody really explains what the symptoms are.

<{POST_SNAPBACK}>

This disease is not an easy one to pin down and it is not the same for everyone. I do not get any serious gastro problems when I get glutened but I do get crippling brain fog and fatigue. I was also obese and now I am at a healthy weight. All of that went away when I stopped eating gluten. I don't have a formal diagnosis but it is so obvious what theproblem was.

I was days away from getting canned from my job but I stopped eating gluten just in time to save it. Everyone used to complain because I couldn't keep up now they complain because THEY can't keep up with ME. I am now involved in a project that has me working 12-16 hours a day 6-7 days a week and is extremely stressful. This is a once in a lifetime, make or break moment that will pay off big time regardless if I get my way or not. I am fanatical about my diet and exercise right now because I have to be in top mental and physical condition. I am tired but not brain fogged and fatigued like I was with gluten.

[ianm]

He was practically catatonic.

<{POST_SNAPBACK}>

That is exactly how I get when glutened. After reading Dangerous Grains I never had the desire to eat a donut ever again.

[Matilda]

..

[Guest DanceswithWolves]

Well, first thanks to all of you. Very detailed explanations and advice!

We all get frustrated and I do agree that doctors have this belief system embedded in their heads. They are very close-minded when it comes to this disease or several intolerances. I just got the feeling that when I left my GI's office, he probably said to his nurses/receptionists, "There goes another patient self-diagnosing again!!"

We live in a nation that is thriving on junk food. Why stop that now by warning everyone what's good and bad for us?

I live in PA, and there are so-oo many overweight people here. I can't help thinking that it's all the damn BREAD and GRAINS that is doing this. I look at men in their 40's and 50's that walk around with this huge gut on them. Could it be they are "glutened" from grains to the point that they all look like that? I know that exercise is definitely missing from their life.

When I get fatigue, it mostly goes through my shoulders and neck. I'm not sure if this is the gluten in my system or just allergies. I am really bad on rainy days. I think the rain triggers many impurities in the air that effect me. Dust, mold, pollen, etc.

That's why I want to go see an allergist. First I have to pay off my current doctor bills.

I never really get any type of pain that causes me to double-over gripping my gut. I did when I was on that IBS medicine, though.

I beleive that the answers are out there. It's just like everything. But if it is not "cost-effective" to track down an answer...why bother. HIV is an Auto-immune disease as well...but it seems like nothing was done about it until it started to spread and people died from it. Only then is the general public made aware how deadly it is and what to do to protect themselves. If Celiac disease caused death, and the doctors linked it to grains, there would be a national panic. Everyone would be told to stop eating the grains. This nation would be in deep.

[Guest nini]

It Def. sounds like you have allergy problems. You could try doing an elimination diet (you can find info about that by googling elimination diet) and keep a journal of your results so that when you do finally go to an allergist, you have some documentation to help them.

I think we have to be partners with our Dr.s in our health care. Most Dr.s want their patients to look at them as invincible "Gods" and expect their patients to not question anything. An educated patient is a much better partner in their own health care.

In my case, My primary care dr. initially thought I was crazy and sent me to a shrink, but after a year of repeatedly showing up in his office with projectile vomiting and explosive diarrhea, he had to acknowledge that this was not all in my head and after he had run all of the tests he knew to run (never even considered celiac) he finally sent me to a GI who recognized celiac right away and I am one of the Dr. dx Celiacs. I have positive symptoms, positive blood test results, and positive response to the diet.

Like someone else said, you don't have to have celiac to have problems with gluten, but in your case, it may be much more than that. You may have multiple allergies, you may have crhon's or colitis (which can also be helped by a gluten-free diet), or something else entirely. YOU have to keep educating yourself and always question your Dr.s. They very well may know what they are talking about, and only you can decide if you want to believe what they tell you.

When I get accidentally glutened, I start vomiting, have heart palpitations, get cold sweats and chills, numbness in fingers and diarrhea, bloating, abdominal cramping, brain fog, fatigue, muscle and joint pain

[tarnalberry]

Now, I understand that many of you never feel well...so how do you cope with your jobs every day?

How do you eat during your lunch break?

Is celiac disease really affecting your job performance?

As long as I don't get gluten, it doesn't affect my job. I sit in front of a computer most of the day, or attend or lead meetings. But I also was never severely impacted by gluten like many others were. If I have been glutened, then it's kinda like going to work when you have a cold. You feel crappy, and are a bit irritable, but you muddle through because you have to. (The specifics of how it affects me are below.)

Everyone seems to always say "I get sick when I have Gluten" but nobody really explains what the symptoms are.

This is what I find hard to understand.

I've seen a number of people on here describe their symptoms, but it's different for everyone. For me, I get a noisy intestinal system (it sounds like it's growling - and no, I can feel that it's not my stomach). I also get intestinal pain - it's a sharp, stabbing pain, as though something's trying to get through my intestines, but can't, and is tearing them instead. I also get dizzy and disoriented - sort of the feeling you get when drunk, but it's not "funny" at all. I also get very tired, to the point where I am sleeping (on and off) at least 12 hours a day for a few days (where my average is closer to 7).

We all seem to curse our doctors when they don't agree with us, but yet we didn't go to med school. How can some of you be so sure that your doctor is wrong with their diagnosis or opinion?

In the case of "there's nothing wrong with you", we can say that because we know our body better than they ever possibly can. That's the key difference - they may have the theoretical knowledge, but we know the symptoms much more intimately than they can. Sometimes, part of the problem lies in ourselves - not adequately conveying the symptoms in language that they use. It's a hard one to fix, though.

It just seems like there are too many people on here that are pointing all their fingers at Celiac when it could be other things?

Brain fog?-couldn't that just be Stress? Studies indicate that when you are under heavy amounts of stress the brain releases certain chemicals throughout your body to prepare and react to the situation.

Depression is also a big candidate for Celiac.

I'm just playing devil's advocate here. Many people turn to this website for help, including myself...we need to let them know that not everything is caused by celiac disease.

And despite all my answers above, I agree with you on this one. I think that many people with systemic conditions are quick to blame other issues on that condition, when it may not be connected. And even if a symptom *could* be connected, it doesn't mean it has to be. (Even if you're celiac, you can still get diahhreah from food poisoning... that kind of thing.) It's a fine line to walk...

[jrom987]

Hi! I am also a newly diagnosed Celiac. I had positive blood tests and my biopsy showed severe damage to the villi. I have been gluten-free for two weeks now and I can't say that I feel great but I have not had any stomach pains since I started. I am still very tired and have lots of aches and pains.

From everything I have read about celiac disease and in this forum, the symptoms vary from person to person. I have so many of the common symptoms (to name a few: diarrhea, constipation, fatigue, dizziness, light headed, bloating, gas, throwing up, very low iron, bone pain).

I agree with trying a gluten-free diet and see if you feel better. What do you have to lose?