Asymptomatic, Recently Diagnosed

[Hummingbird4]

Hello, I'm Hummingbird4. Here's my story:

In April I was having upper stomach pain, and thought I might have an ulcer. My GP suggested I take Prilosec, so I did for 2 weeks. The pain didn't completely go away, so I called a gastroenterologist and scheduled an endoscopy, while continuing to take the Prilosec. By the time of my endoscopy on June 10, my stomach pain was gone. Nevertheless, I had the endoscopy anyway, assuming they wouldn't find anything. The report said he took biopsies, but it was otherwise "unremarkable." Like I said, I didn't figure they'd find anything.

Two weeks later I went for my follow-up appointment and was *very* shocked to hear the doctor tell me I had Celiac Disease. He showed me pictures of the scaling/scalloping of my mucosa, and the report stating I had moderate flattening of the villi. They had a Celiac Panel blood test run anyway, just to "dot the i's and cross the t's," as the doctor put it. I told the doc that I was going to Europe for 2 weeks and wouldn't start any kind of diet until I got back, and he said that was fine.

So, now I'm home from vacation, after stuffing myself with bread, pasta, and beer in France and Italy. Called the doc's office today to find out the results of my antibody tests, and I'm definitely positive (I was hoping for a misdiagnosis of the biopsy!!).

Lab results from June 24:

tTG Ab IgA: 19

Endomysial Ab IgA: positive

Endomysial Ab titer: 1:40

Serum IgA: 192

As my title description says, it seems unbelievable to me that I feel fine yet have this disease. I'm having a really hard time accepting it. This isn't a "thank goodness I finally found out what was wrong with me" kind of situation. So... where to start? How to deal with it? I called the nutritionist today to get an appointment scheduled, but I'm sure I'll be able to find all kinds of info online in the meantime. I'm glad I found this place!

I have two kids (teens). Should they get tested? Neither have any symptoms. I don't know of anyone in my family history celiac disease, although I do have an aunt on my mother's side who cannot eat wheat, but my mom says that she can eat it sometimes now, so I'm pretty sure what she has is not celiac disease.

I think my husband will be very supportive of my new lifestyle, but he's the type of person who wants to know WHY I can't just have a little bit now and then, and IF I accidentally ingest some gluten, might I as well eat the whole loaf?

Thanks for reading. Any suggestions would be welcome and much appreciated.

[Hummingbird4]

I will also add that I have been hypothyroid for about 10 years. Not sure if that has anything to do with it, but thought I'd throw it out there. Also, I'm 42 years old.

Hummingbird4

[Ursa Major]

Hi, and welcome here! You aren't the first person diagnosed who was asymptomatic. But really, you WERE having symptoms, that is why you got tested in the first place!

Yes, your teens should definitely get tested as well, as it is genetic. That aunt likely has celiac disease as well, and should NOT eat wheat at all, not even sometimes. As with you, her villi could be very damaged without having lots of symptoms.

Tell your husband that if you have gluten now and then, it is quite likely you will eventually end up with cancer somewhere in the digestive tract, and die much sooner than you would otherwise. I imagine he would like you around for as long as possible.

[Cath724]

Hi Hummingbird!

I'm new here as well, and glad to be finding some others on here who were primarily asymptomatic before. Like you, my celiac was found when I had an endo--I thought I had a bleeding ulcer. I can completely relate to your feelings of disbelief that you even have the disease, because you don't feel ill like so many others with celiac. But peruse these forums regularly and you'll soon learn the importance (and necessity) of going gluten-free--because of the damage the gluten causes you internally. The stats for celiacs (who don't stop consuming gluten) are very alarming with regard to increased rates of various cancers, etc.

And it's likely you may have "withdrawal" when you begin to go gluten-free, but don't let that change your mind-- it doesn't last forever! It's just means to an end...! These forums will help tremendously. Good luck!

[gfp]

Symptomatic can be misleading, you obviously had stomach pains but you might be surpised at symptoms you didn't realise you had.

The easiest way to look at this is like a smoker or alcoholic. Many might say "Oh, my health is fine I just have normal irks and things" but the reality is there are lots of symptoms that built up slowly over years... we tend to think "Oh its getting older" or "oh everyone gets this" etc. These range from (in your case) thyroid issues to headaches, other allergic responses and a list too long but often including neurological issues.

Not everyones gets even a fraction of them all, some are nurtition related because you are not adsorbing the vitamins, minerals etc. and others direct responses to gluten acting as a toxin.

The quickest and easiest way is a quite extreme short term change in diet ... and lifestyle. Most people will notice a huge difference after 3 months COMPLETELY gluten-free; BUT completely gluten-free is pretty harsh... it means no eating out and no eating a suspect food which is pretty much anytihng in a tin, packet or other processed food.

Your also in for surprises, gluten is used in a staggering amount of common items (like Soy sauce is 50% wheat or barley unless you get spcial soy sauce) .. and cross contamination is another aspect... say someone wipes your plate with a cloth used to wipe up some errant soy sauce or breadcrumbs...

but he's the type of person who wants to know WHY I can't just have a little bit now and then, and IF I accidentally ingest some gluten, might I as well eat the whole loaf?

OK, first part is no... none is none.... the best way to look at this is like the smoker/alcoholic... THIS IS MOST important while you do an initial 'detox'... because each small amount will set back that process and it can become like 3 steps forwards and 2 back....

Second part: Well nonone really knows.... I personally have on occaision been glutened (on vacation) and then managed 3-4 days eating gluten... however I have then been REALLY REALLY sick... at the same time when you have been gluten-free for a while you get pretty sick pretty fast...on the tiniest amount... most of us develop symptoms which seem much worse if we are gluten-free and then mess up than before... again like a smoker who has 20 a day, they might feel just a bitoff but if you don't smoke for 1yr then smoke 20 you would be vomiting...

[Hummingbird4]

Thanks Ursa, Cath and gfp for your replies. I ordered a few books last night which should arrive on Thursday, then I'll get started figuring out how to get started.

Any suggestions on keeping my kitchen free from cross-contamination? As I said, I have two teenagers (my daughter is willing to get tested but my son refuses. He's going off to college in the fall.) Assuming my daughter is not celiac, she will of course continue to eat foods with gluten in them.

Thanks.

[home-based-mom]

Thanks Ursa, Cath and gfp for your replies. I ordered a few books last night which should arrive on Thursday, then I'll get started figuring out how to get started.

Any suggestions on keeping my kitchen free from cross-contamination? As I said, I have two teenagers (my daughter is willing to get tested but my son refuses. He's going off to college in the fall.) Assuming my daughter is not celiac, she will of course continue to eat foods with gluten in them.

Thanks.

The easiest way to avoid cross contamination is to get any and all gluten out of your house and keep it out of your house. Learn to cook gluten free. It can be more tasty and healthy and nutritious than what you have been used to. If certain family members refuse to go gluten free, they can buy it and eat it elsewhere - such as lunch at work. Your home should be safe for you.

Opened condiments such as butter, mayo, peanut butter, jelly, anything and everything that may have been used to make anything containing gluten and then had a utensil stuck back in (as everybody does) are now all contaminated. Toss them and get new ones.

Wash everything in your kitchen. Dishes, counters, cupboards inside and out, curtains, towels, appliances, everything. Throw away mixes (flour dust gets and stays on everything) colanders, wooden mixing spoons and cutting boards, your toaster, and scratched non-stick cookware. There is no way to remove the sticky gluten molecule from all the nooks and crannies.

Think of gluten as dog poop. If you touch it, it is on your hands. Whatever you touch, directly or indirectly, after that becomes contaminated. Per the above example, if you wipe your hands on a kitchen towel, wipe a dish with that towel and then eat off the dish, you just got glutened.

You cannot peel the top off the pizza and you cannot pick the croutons off the salad.

Read labels. Read labels. Read labels. There are many mainstream products that are OK if you buy the right brand. For instance, Heinz ketchup is OK - Hunts is not. La Choy soy sauce is OK - almost everything else is not. Read more labels.

Read everything you can in this wonderful forum. You can avoid a lot of mistakes by reading about the ones others have made!

[MelliDuff]

I'd like to add a little something, I know all this sounds overwhelming and it can be. Try not to get to overwhelmed by it all - it's just a new style of doing things. The worst part is not eating out(for the people that do it a lot), don't kill yourself if you mess up, everyone does, and even the most vigalent people still get "glutened".

Luckily I am like you and my symptoms are not that horrible when I do eat gluten - but they are not good either. A trip to the bathroom to throw up or do the other once and a day of tiredness is about what happens to me. Sometimes a little rash on my face.Thats all i get after a week of eating loafs of bread haha!

After you get used to not eating gluten it's pretty easy to follow.

Your basically good with eating any fruit or vegetable, and meat, watch sauces and marinades. (for meat)

M and m's are gluten free so is haggandaz ice cream (vanilla and strawberry)you can still have all your yummies. They will just change from what they are now.

If you make a mistake don't beat yourself up over it. It's likely (at first) that you wont notice if you get a crumb in your salad. And thats not nessicarly a bad thing. The more gluten you get out of your diet the better but what is unfortunate is that the longer you have been gluten free the more sick you will feel if you get exposed to it. aka lethargic, allergies, depression, sinus problem any of these mild things can be from gluten rashes, stomach pains, gall bladder pains etc. It's pretty unbelievable.

You don't need to worry about everything little thing right now, just try to take baby steps towards your goal of completely getting it out of your diet. It's a lifestyle change but it doesn't have to be a negative thing and it doesn't have to be hard either. Since you don't feel really sick you have the ability to ease into it, most people don't get that opportunity. It sounds like an all or nothing deal but the short of it is it really isn't that big of a deal.

good luck,

christa

ps make sure you take a list of no no ingredients with you to check labels - there is one on the forums. Get familiar with it. Before you know it it's second nature.

[gfp]

Thanks Ursa, Cath and gfp for your replies. I ordered a few books last night which should arrive on Thursday, then I'll get started figuring out how to get started.

Any suggestions on keeping my kitchen free from cross-contamination? As I said, I have two teenagers (my daughter is willing to get tested but my son refuses. He's going off to college in the fall.) Assuming my daughter is not celiac, she will of course continue to eat foods with gluten in them.

Thanks.

I can only agree with home_based_mom, the only real effective way is getting ALL gluten out of the kitchen.

If you have an understanding spouse, no children ... etc. you might mostly get away with a shared kitchen with clear zones but ... that really doesn't seem possible for you.

Remember it only takes a crumb (or actually a lot less) .. someone lazily wiping crumbs on a dishcloth will end up in you somewhere down the line...

Luckily I am like you laugh.gif and my symptoms are not that horrible when I do eat gluten

@melliduff .. you can't see most of the symptoms... it doesn't mean you are not doing yourself long term harm...

not to mention ... if you continue you will most likely develop more symptoms you will then be stuck with for life...

[Darn210]

I do just want to throw out that we maintain a mixed household. We have one cabinet that has all the gluten in it and one section of "gluten" counterspace. However, all meals that I cook are gluten-free. I don't want to make two meals each time. There are no gluten flours/cake mixes/muffin mixes, etc. All my baking is gluten free. I don't want to clean up flour that is floating around the kitchen and landing everywhere. Our gluten items consist of bread/buns, cereal and some snack crackers. The gluten eaters (my husband, son, and on rare occassions, me) have all been warned (and reminded every so often) that if my daughter starts having problems with cc, then the rest of the gluten goes. Helps everyone remember to clean up after themselves.

Also wanted to say that I couldn't believe it when my daughter was diagnosed. She just had a little acid reflux is all that just wasn't quite controlled by medication. Now she is no longer on any medication. Her one major run in with gluten (accidentally, but a fair amount) was considerably worse than before she went gluten-free . . . and letting her have more, since she had already had some, was not an option. We just needed her to recover quickly from the hit she already had taken.

[MelliDuff]

I can only agree with home_based_mom, the only real effective way is getting ALL gluten out of the kitchen.

If you have an understanding spouse, no children ... etc. you might mostly get away with a shared kitchen with clear zones but ... that really doesn't seem possible for you.

Remember it only takes a crumb (or actually a lot less) .. someone lazily wiping crumbs on a dishcloth will end up in you somewhere down the line...

@melliduff .. you can't see most of the symptoms... it doesn't mean you are not doing yourself long term harm...

not to mention ... if you continue you will most likely develop more symptoms you will then be stuck with for life...

My point was you don't have to get all dizzied out by this - it is a do-able situation - to have a mixed house hold. I have 3 people my husband and my 4 year old and 1 year old that do eat gluten. We all live in the same house - plus we are talking to someone who is just starting out here - Some people react badly to one crumb some don't - she is one that doesn't - was my point. I know how overwhelming all of this can be at first.

btw I'm not continuing with anything, I suppose you assumed that I eat bread every week? - It is my body and I am aware of what I am doing to it. Thank you for your concern, but please don't assume I don't take gluten free seriously because I'm not do or die type personality.

let's not forget everyone is different - there are people that do well with drastic immediate change and some that fair better with gradual changes that lead them to the same ultimate goal.

[cymrudenver]

Today is my second day living gluten free, so far it's going well, no where near as scary as I told myself it would be, it's just back to basic 1940's cooking.

I was diagnosed after having almost no symptoms - just moderate, persistant anemia - I told my GI I thought he was smoking pot when he wanted to test me for Celiac (I do know him through work, I'm an RN), when it came back positive I allowed myself a pitty party for one day then started to read, read, read. I had my children tested, the healthiest one - my 11 year old springboard diver - tested hugely positive. I would have never guessed in a million years...though with hindsight she is well below average height, has had two ER visits with unexplained stomach pains, so the subtle signs were there I just never connected the dots.

This board is wonderful, I've become more addicted to this place then I ever was to gluten You can do this, we're all in it together.

Hugs to you, feel well very soon.

[Hummingbird4]

Thank you for the recent replies. I have an appointment with a nutritionist scheduled for July 30. In the meantime I am going to read all that I can, clean out my kitchen, and prepare for a start date of August 1.

My daughter had her blood drawn today for a Celiac panel. We should get the results early next week.

I was thinking, my dad has Barrett's Esophagus, where he has coughs a lot and has trouble swallowing sometimes. He's also diabetic, and I wonder if he has ever been tested for celiac disease. I'm going to talk to him about it.