Silent Celiac And Hard To Keep The Diet

[koachko]

I had 0 symptoms but after a routine blood test my doc said I most likely had Celiac, which was then confirmed by an endoscopy. I used to eat nothing but bagels, pizza, beer, you get the picture, so the change has been extremely difficult. I have since tried relentlessly to keep the gluten-free diet but if I break it, I still feel no symptoms. I pretty much feel the same as I ever did weather keeping the diet for 3 months or eating gluten for a weekend. 

 

What I want to know is, if I have a beer or a bagel every now and then is it pointless to keep the diet at all? I figured with a 95% gluten-free diet and the sneak in a treat every now and then approach would help me keep it better (and it has). If I need to be 100%, no breaking whatsoever ever I need to know why and the possible effects. We're talking cutting back from a bagel every morning to one every 10 weeks or so. 

 

Please encourage/advice/inform!

 

[bartfull]

Thyroid problems. Lupus. Rheumatoid arthritis. Cancer. MS. Neurological problems.

 

You risk all of these and much more if you don't go STRICTLY gluten-free.

 

The good news is there are substitutes for all of your old favorites. Try Udi's multi-grain bread. Bard's beer. And lots of places have gluten-free pizza now, not to mention all of the gluten-free frozen pizzas available. Sure it'll be hard at first, but the payoff is worth it. You may not have any symptoms now but you will have lots of nasty symptoms if you continue eating gluten foods.

 

And you might just find that you DID have symptoms and didn't even know it. Not all celiacs have gut symptoms. Heck, I had leg cramps, frequent and painful hiccups, rashes, headaches, and lots of other things that went away when I went gluten-free.

 

I'm sure others will be along soon to chime in, but in the meantime go to the Newbie 101 thread in the coping section. Be sure to click on all the links provided. You will learn a lot about celiac and the diet and cross-contamination.

 

If the rest of us here can do it, you can too. It really does become second nature. Your future health is depending on you.

[SugarPlumFairy]

bartfull, what a great reply! You have really put celiac disease in perspective for me.  I have had one positive blood test, and unfortunately diagnosed with hypothyroidism at same time.  I am awaiting results of further blood tests. 

I am a 5 year breast cancer survivor, and last fall starting having extreme spine, hip and occasional knee pain, diagnosed with osteoathritis on my spine.  I have been feeling very poorly for about 2 yrs, I thought it was complications from chemo I had 5 years ago. 

I finally went back to dr 3 weeks ago, and laid all of the symptoms I've been having.  saw her on Monday, and she said the blood tests indicate celiac disease and hypothyroidism, and I am deficient in vitamin B12 as well.  I have extreme fatigue, bone & joint pain, gastrointestinal issues, diarrhea and or constipation, occasional migraines, and depression.

I am obese, and cannot seem to keep weight off. 

I have been having cognitive problems, confusion, irritability, can't remember words, or what I was going to say, as bad as it was when I had chemo! I thought it was extended chemo brain lol.

I never dreamed it could be celiac disease, but the puzzle pieces finally fit. 

Is it true I should keep eating gluten until dr recommends a biopsy or endoscopy?  My dr didn't mention that.

Thyroid problems. Lupus. Rheumatoid arthritis. Cancer. MS. Neurological problems.

 

You risk all of these and much more if you don't go STRICTLY gluten-free.

 

The good news is there are substitutes for all of your old favorites. Try Udi's multi-grain bread. Bard's beer. And lots of places have gluten-free pizza now, not to mention all of the gluten-free frozen pizzas available. Sure it'll be hard at first, but the payoff is worth it. You may not have any symptoms now but you will have lots of nasty symptoms if you continue eating gluten foods.

 

And you might just find that you DID have symptoms and didn't even know it. Not all celiacs have gut symptoms. Heck, I had leg cramps, frequent and painful hiccups, rashes, headaches, and lots of other things that went away when I went gluten-free.

 

I'm sure others will be along soon to chime in, but in the meantime go to the Newbie 101 thread in the coping section. Be sure to click on all the links provided. You will learn a lot about celiac and the diet and cross-contamination.

 

If the rest of us here can do it, you can too. It really does become second nature. Your future health is depending on you.

 

[squirmingitch]

bartfull, what a great reply! You have really put celiac disease in perspective for me.  I have had one positive blood test, and unfortunately diagnosed with hypothyroidism at same time.  I am awaiting results of further blood tests. 

I am a 5 year breast cancer survivor, and last fall starting having extreme spine, hip and occasional knee pain, diagnosed with osteoathritis on my spine.  I have been feeling very poorly for about 2 yrs, I thought it was complications from chemo I had 5 years ago. 

I finally went back to dr 3 weeks ago, and laid all of the symptoms I've been having.  saw her on Monday, and she said the blood tests indicate celiac disease and hypothyroidism, and I am deficient in vitamin B12 as well.  I have extreme fatigue, bone & joint pain, gastrointestinal issues, diarrhea and or constipation, occasional migraines, and depression.

I am obese, and cannot seem to keep weight off. 

I have been having cognitive problems, confusion, irritability, can't remember words, or what I was going to say, as bad as it was when I had chemo! I thought it was extended chemo brain lol.

I never dreamed it could be celiac disease, but the puzzle pieces finally fit. 

Is it true I should keep eating gluten until dr recommends a biopsy or endoscopy?  My dr didn't mention that.

ABSOLUTELY you should keep eating gluten until ALL testing is done including the endoscopy. The endoscopy would take biopsies - they should take 6 & no fewer than that.

 

And a huge congratulations on being a 5 year survivor!

[SugarPlumFairy]

thanks so much, squirmingitch! I will keep my diet the same.  It is so hard knowing it is harming me, but I want to be sure. 

ABSOLUTELY you should keep eating gluten until ALL testing is done including the endoscopy. The endoscopy would take biopsies - they should take 6 & no fewer than that.

And a huge congratulations on being a 5 year survivor!

[cyclinglady]

With a history of cancer, I would push my doctor for a GI consult/endoscopy ASAP! See if they can squeeze you in!

In the meantime, you can take a b-12 supplement (sublingually since you might have intestinal damage (be sure it is Gluten free just in case) and eliminate dairy since many Celiacs have lactose intolerance that is often temporary due to intestinal damage.

Good luck!

[Bajansun]

Thaanks for these posts. I have been Celiac for about 10 years and am still learning the ins and out, do's and don'ts.

I recently had some major issues through hypothyroidism and the complications. Now I am on folic acid and manganese asporotate. I am also considering taking B12 as a further supplement.
I have tried the "have a treat" now and again and this is not the way to go BUT it is very difficult to stop all of the things that make life enjoyable.

In Barbados there is no gluten free beer, so that is off my list.  Fortunately we are able to get several gluten-free products (bread is very important) which has made life a lot easier. When I first got my diagnosis the S'mkts were virtually a wasteland in terms of gluten-free items.
I try to read these posts whenever I can and have always found very useful information or comments.
Many thanks to all who make these contributuons.

[Dougie]

Hello : ) I don't have Celiac but my 7 year old daughter does. She was properly diagnosed at 18 months. She has never been sick or had side effects from accidently eating gluten.

I understand your frustration about the diet and missing out on regular food. I feel my daughters pain. She has often told she wants to be a "gluten girl". But it is best to stick with the diet or there may be future damage to your intestine.

[SugarPlumFairy]

ABSOLUTELY you should keep eating gluten until ALL testing is done including the endoscopy. The endoscopy would take biopsies - they should take 6 & no fewer than that.

 

And a huge congratulations on being a 5 year survivor!

Well, I have an update today, my dr said the latest bloodwork says I am negative for celiac disease.  I'm struggling to accept it because I have so many of the symptoms! I asked her "what is going on with me then??"   She is sending me to an allergist to see if I am allergic to wheat.  She may request a scope, but is not hopeful it will be approved.  Meanwhile, my health is deteriorating daily.  I don't know where to turn.

[cyclinglady]

Well, I have an update today, my dr said the latest bloodwork says I am negative for celiac disease.  I'm struggling to accept it because I have so many of the symptoms! I asked her "what is going on with me then??"   She is sending me to an allergist to see if I am allergic to wheat.  She may request a scope, but is not hopeful it will be approved.  Meanwhile, my health is deteriorating daily.  I don't know where to turn.

Did you get the complete panel? Here is the list of tests:

-Tissue Transglutaminase (tTG) IgA and (tTG) IgG

-Deamidated Gliadin Peptide (DGP) IgA and (DGP) IgG

-EMA IgA

-total serum IgA and IgG (control test)

-AGA IGA and AGA IgG - older and less reliable tests largely replace by the DGP tests

-endoscopic biopsy - make sure at least 6 samples are taken

(Source: NVSMOM -- )

i only test positive on the DGPS IGA test. If my doctor had not ordered the ENTIRE blood panel, my celiac disease diagnosis would never have been caught! Get copies of your lab tests to see if you had the complete panel.