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Celiac But No Horrible Symptoms

pnltbox27

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pnltbox27 Contributor
pnltbox27
Posted

i avoided this web site for the last 7 or 8 months because i said "screw it" and started eating whatever i wanted, i dont know why, but something made me log on tonight and i read a post about cheating on the diet and it made me feel like crap and it made me wonder if anyone else has the same dilema ..blood test and scope says i have celiac but i just dont have the horrible side affects that most on this site have.if you are out there what do you do to stay gluten free???

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cymrudenver Apprentice
cymrudenver
Posted

My daughter and I were both diagnosed within the last 10 days, neither of us have any physical symptoms to complain of. We have set the date of next Tuesday to begin our gluten free lives, we're been shopping, got some pastas, soups etc plan to buy our "special" toaster etc and this week we are saying goodbye to gluten in style.

I don't know how we'll do, I just know we have to do it. It's not work the gamble with my health and definatly not with hers.

morelindil Newbie
morelindil
Posted

I can't really say as I have terrible pain when I eat gluten now. It didn't start that way, but since I have cut it out each accidental ingestion of gluten has progressively gotten worse.

Perhaps you'll find that the longer you go without having the gluten the more you will find you do have the symptoms. I don't know how long you have gone without gluten before adding it back in. For me, it took days for the change to happen. Cheating now isn't even an option for me, the pain is not worth it. And I wouldn't want to see how bad the reaction could become.

ShayFL Enthusiast
ShayFL
Posted

I dont know if cancer scares you, or lymphoma, or auto-immune diseases like diabetes type 1, graves disease, hashimotos, MS. Those could be in your future if you continue to poison yourself with gluten.

It is like the smoker who "feels fine" and then one day gets dx with terminal lung cancer.

It is like the woman who works at the fertilizer plant and then has 6 stillborn babies.

Damage does not have to be "felt".

You have your dx.

You know what to do.

It is up to you to decide.

Is it worth the risk?

jparsick84 Rookie
jparsick84
Posted

The only symptoms I had before I was diagnosed was this awful itchy rash. It made chicken pox look like a walk in the park. So when I was glutenated, I would itch like mad all over. (This is DH, by the way, but I had it way worse than most people). So my only incentive not to cheat was this rash - I couldn't sleep for itching so much!

Now that I've been gluten-free for a year, whenever I get the teenyest bit of gluten I DO get the big D. So once you fully pull yourself out of the wheat and gluten, you'll realize how many other symptoms you really did have (headaches, fatigue, sleeping 10+ hours a night and waking up tired, depression, etc).

Just remember - if you want to feel 100% better, you have to go 100% gluten-free. Period.

Good luck!

munkee41182 Explorer
munkee41182
Posted

I didn't have many of the severe symptoms that a lot of others have. But after being off the gluten-free diet for 2-3 years I started doing more research and the whole cancer, infertility, diabetes, etc started scaring me. Also the further I read, I realized I had more symptoms than I thought. I had the spaceyness, gas, constipation, bloated belly. I thought my belly was from gaining weight, but two weeks after going back gluten-free, the bloat is almost gone. I'm in pretty decent shape so it was kind of funny to see someone with a faint 6 pack that was protruding outwards - I thought it was too much muscle I was gaining.

Honestly, do yourself a favor, stay on the diet. It cant' hurt you, only help you!

Mel-in-Tampa Newbie
Mel-in-Tampa
Posted

Hi, I have a similar issue. I was diagnosed in June 08; and have tried to be gluten free since. My problem is that I know I have probably consumed gluten, but I can't tell. Now I am second guessing EVERYTHING I eat. My daughter who is 9 was a solid negative on the blood test; but has chosen to go gluten free and lactose free due to stomach aches (her choice). So, being a parent I'm stuck being a good example. no sitting on the fence for me; and no cheating.

Mel

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Breezy08 Newbie
Breezy08
Posted

OK, I'm new to this, but have read that only 50% of celiacs have symptoms. Given this, how is it that "symptom-less" people were tested for celiacs? It's not like it shows up in a standard blood test. Thx!

Rachel--24 Collaborator
Rachel--24
Posted
OK, I'm new to this, but have read that only 50% of celiacs have symptoms. Given this, how is it that "symptom-less" people were tested for celiacs? It's not like it shows up in a standard blood test. Thx!

Most of the time its because someone else in the family has been diagnosed.

munkee41182 Explorer
munkee41182
Posted

I was tested because I had 3 other family members who had it.....

pnltbox27 Contributor
pnltbox27
Posted
  • Author

i actually went to a gi doc beacause i had constant gas which my wife and coworkers didnt appreciate, its kinda a joke at work now .i tell them i have a medical condition...lol, but the doc hit it on the head 2 mins into interview. i had blood work and scopes and both came back positive. no one else in my family has been tested ,but im convinced my dad and younger brother has it.neither will get tested.

Puddy Explorer
Puddy
Posted

Didn't have GI symptoms, but had osteoporosis and severe anemia which caused doctor to start investigating. So, I actually did have symptoms, just not the ones people usually associate with celiac disease.

jesslynn555 Rookie
jesslynn555
Posted
I dont know if cancer scares you, or lymphoma, or auto-immune diseases like diabetes type 1, graves disease, hashimotos, MS. Those could be in your future if you continue to poison yourself with gluten.

It is like the smoker who "feels fine" and then one day gets dx with terminal lung cancer.

It is like the woman who works at the fertilizer plant and then has 6 stillborn babies.

Damage does not have to be "felt".

You have your dx.

You know what to do.

It is up to you to decide.

Is it worth the risk?

ShayFL,

I am so glad you said that. I really needed the reminder. I was recently diagnosed and have no symptoms. My son, who is the "poster child" for celiac was diagnosed last year and we had everyone in the family tested just to make sure. I was positive it would be from my husband's side, but sure enough, my numbers were sky high (TTG 134).

It's hard to stay motivated to such a restrictive diet when you don't notice any immediate relief. Another thing is when I read that if I go completely gluten-free, then I will get sick if I eat it by accident. Great, so I'm making myself more allergic??!!

But I think that what ShayFL said reminds us why it is worth it.

pele Rookie
pele
Posted
. Another thing is when I read that if I go completely gluten-free, then I will get sick if I eat it by accident. Great, so I'm making myself more allergic??!!

I don't think this is how it works. Your antibodies were sky-high, a result of the inflamatory response and your immune system going crazy working over time. When you quit eating the offending substance--gluten-- the inflamation and immune system calm down. Since you will then have normal antibody levels, your body is no longer in constant fight mode and you may feel your body react to gluten, whereas you hardly noticed it before. It is believed that the constant inflammation and overworking of the immune system are, in part, what leads to cancer and other autoimmune disorders, thyroid disease, adrenal fatigue, etc. so it's a good idea to be completely gluten-free and let your immune system rest until you really need it.

Dr. Peter Green explains this in depth and better than I do in his book Celiac Disease, A Hidden Epidemic.

Ab-Normal Rookie
Ab-Normal
Posted
OK, I'm new to this, but have read that only 50% of celiacs have symptoms. Given this, how is it that "symptom-less" people were tested for celiacs? It's not like it shows up in a standard blood test. Thx!

Another anemic here; had the endoscopy to look for internal bleeding, found celiac instead.

I didn't think I had symptoms, until I noticed how much less gas 'n' bloating I had...

neesee Apprentice
neesee
Posted
i actually went to a gi doc beacause i had constant gas which my wife and coworkers didnt appreciate, its kinda a joke at work now .i tell them i have a medical condition...lol, but the doc hit it on the head 2 mins into interview. i had blood work and scopes and both came back positive. no one else in my family has been tested ,but im convinced my dad and younger brother has it.neither will get tested.

I hate to be blunt but if you stink, you do have symptoms! It's just foolish not to follow the diet. Your health will decline. It might take time, but you will possibly do irreversible harm.

neesee

IMWalt Contributor
IMWalt
Posted
i actually went to a gi doc beacause i had constant gas which my wife and coworkers didnt appreciate, its kinda a joke at work now

HAHA. You sound just like me. I suffered with VERY bad gas for years, along with cramps. The intermittent D started last year. I always figured my gas was from the foods I ate, but wondered how come most of my friends did not has gas all day and night. Funny thing is, I eat all the same foods now (except the ones with gluten) and no gas!

Stick with the diet. You'll feel better, and reduce the chance of the other bad things that can happen. I can live with the gas (my wife wouldn't agree), but my life is much easier without it.

Walt

wakefield Apprentice
wakefield
Posted

I never knew I had Celiac Disease until 8 weeks ago when at a regular physical I found out I was anemic. The doctor insisted I have a colonoscopy and endoscopy immediately. They only symptoms I had was unexplained weight gain even though I was at the gym 3 times a week and really working out and I would notice my stomach was bloated after eating!! I went on the diet immediately. Now I am experiencing numbness in my toes on my left foot which scares me. Any suggestions?

Tim-n-VA Contributor
Tim-n-VA
Posted
OK, I'm new to this, but have read that only 50% of celiacs have symptoms. Given this, how is it that "symptom-less" people were tested for celiacs? It's not like it shows up in a standard blood test. Thx!

For me it was erractic liver function test which were part of the routine blood tests that my doctors ordered. From there we went ultrasound of the liver which showed irregular densities. That lead to just screening tests for other things that could cause liver damage since I ddin't drink much.

While I had none of the typical symtoms I clearly was damaging my body. Ironically, for me the lack of symptoms makes it easier. If it were as "simple" as GI symptoms, I'd be more likely to cheat. It is the hidden damage that I can do a trade-off with the temptation to cheat.

Cath724 Apprentice
Cath724
Posted

I'm so glad to see this post! I'm also the "silent" celiac type, diagnosed 3 weeks ago (thought I had a bleeding ulcer--black stools, sour stomach, etc., so I had an endo, which showed celiac--and no ulcer, go figure:).

As for keeping motivated, ShayFL certainly sums it up well-- to read the stats on our increased risk of certain cancers is what does it for me. Just knowing that the gluten is damaging me internally justifies the sacrifices.

Reading about celiac has helped me to self-educate-- I loved Jax Peters' style in her "Gluten-Free Bible," she's so witty and funny to read.

What may be the biggest blessing with my diagnosis is that my 5-year-old nephew is now to be tested for celiac this week-- no one in my family had heard of celiac before my diagnosis, and my nephew has had health problems since birth and is very small for his age, so celiac would explain a lot for him-- and finally get him on the road to recovery. I will be very, very grateful for my pseudo-ulcer if this is the case!

cymrudenver Apprentice
cymrudenver
Posted

I was investigated for anemia that would not respond to iron therapy. My daughter who is also symptom free had very high blood results.

CCR Newbie
CCR
Posted

I also had anemia and a doctor who pushed me to have the endoscopy and colonoscopy because he feared I was bleeding somewhere. He told me as soon as I woke up that he suspected celiac and the biopsy confirmed it. I was completely surprised as I had no other symptoms and no one on my side of the family has ever been diagnosed with celiac (so far). But my husband's mother has it and now it looks like my youngest (13) has it, too. He also feels fine but has been losing weight, which triggered his bloodwork.

So we are in the same boat. Eating gluten doesn't give us distress(so far). I have been gluten-free for about a month and I can only hope I've been doing a good job of avoiding cross-contamination, etc. Because I can't tell if I have had gluten.

CCR

Hummingbird4 Explorer
Hummingbird4
Posted

No, I don't have horrible symptoms either. I was diagnosed on June 24 and haven't started the diet yet because I went on vacation 4 days later. Just got back, and am getting ready to start the diet but I'm none too happy about it.

I had an endoscopy because of upper stomach pain. I thought I had an ulcer, but got the celiac disease Dx instead. I think I'd rather have the ulcer! :rolleyes: I also have positive blood work.

At least it was caught before the horrible symptoms began. We should look at it that way.

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