Do I Have To Be As Strict As Other Celiac Folk?

[sparky2222]

I have been diagnosed Celiac. I have two of the main genes and I hit positive on two of the other tests at entolab.com

Fecal Anti-gliadin IgA: 15 Units

Fecal Anti-tissue Transglutaminase IgA: 11 Units

So I have a question...

My symptoms are very insidious - my body just seems to be being affected in subtle ways such as weird pain in my intestines when I wake up in the morning - brain fog - etc... but no MAJOR reaction such as sick/diarrhoea etc.

My question is, do I need to be super strict about cross contamination

For example the idea of following the directions on this post is depressing for me!

https://www.celiac.com/articles/21587/1/Tra...ants/Page1.html

Since I just have slow burning insidious symptoms couldn't I just order a grilled salmon and hope for the best?

All advice much appreciated.

[mushroom]

I have been diagnosed Celiac. I have two of the main genes and I hit positive on two of the other tests at entolab.com

Fecal Anti-gliadin IgA: 15 Units

Fecal Anti-tissue Transglutaminase IgA: 11 Units

So I have a question...

My symptoms are very insidious - my body just seems to be being affected in subtle ways such as weird pain in my intestines when I wake up in the morning - brain fog - etc... but no MAJOR reaction such as sick/diarrhoea etc.

My question is, do I need to be super strict about cross contamination

For example the idea of following the directions on this post is depressing for me!

https://www.celiac.com/articles/21587/1/Tra...ants/Page1.html

Since I just have slow burning insidious symptoms couldn't I just order a grilled salmon and hope for the best?

All advice much appreciated.

It is very tempting to think that if you are not "super sensitive" that it is not so important to be so strict with the no gluten policy. But just because you do not have major digestive issues does not mean that gluten is not harming you in more insidious ways. Everyone's reaction to gluten is different as you probably know. Some get only neurological symptoms, some go straight to colon cancer or diabetes and bypass the C and D entirely. Now that does not mean that you have to go as far as Chef Daniel would you have you go for a cruise where you are going to be eating all your meals on board and in total reliance on the ship's chef. For going out to dinner it is usually sufficient to talk with any (or all, depending on how you feel about it) of the following: the manager when making a reservation, the waiter when placing your order, the chef with specific cooking instructions/requests. If you tend to eat often at the same place they will get to know you and eventually will be able to accommodate you without your even asking.

Not being "super sensitive" will probably mean that you can eat foods that are made on "shared lines" or manufactured in a facility where gluten is processed, both of which I do. But it does not mean that you can let down your guard where gluten is concerned, because it is just as likely one day to rise up and bite you in a manner you were not expecting, having been slowly and insidiously eating away at you. Sorry about that.

[zero]

I had a similar question for my doctor and he suggested I study up on the disease since I hadn't heard of it before. I suggest reading "Celiac Disease: A Hidden Epidemic" by Green and Jones which I think provides a pretty good guide on the medical aspects of the diseases. One of the examples they give is that eating gluten is like skinning your knee. In time it heals but continually damaging the knee will have consequences. Unfortunately the consequences are really bad and the tolerable level of gluten is really small. If your like me and a lot of other folks, you will find yourself becoming sensitive to gluten on a gluten free diet even if you weren't sensitive before and will want to avoid it under all circumstances.

[AKcollegestudent]

In a word? No. Before going completely gluten free, I only ever exhibited insidious symptoms--brain fog, exhaustion, migraines, and neurological symptoms. After, however, it's become normal that if I get glutened, I will have just about every symptom known to man. And, because my body doesn't know how to function when it's attacked anymore, the symptoms drag on for days. And I already have enough complications from celiac; I don't want anything else showing up five years down the line. I avoid contact as often as humanely possible.

And honestly, once you get in the habit of asking questions and double-checking, it doesn't seem that bad. Perhaps it's because I've always had to fight to make a cook or waiter listen to me. When I go to a restaurant, I know that unlike the author of that article, I'm going to have to work six times as hard to get the cook to take me seriously. I'm not quite 21, look 14, and I'm female. I've worked in restaurants and I know that what the waiter tells you and what the cook does are very different things. I've had customers tell one manager they have an allergy and come in two days later with another manager and not tell that manager. And I've had managers who don't listen to the customer regardless.

So yes, I do ask--I ask if there's wheat or gluten, I ask if there's soy or dairy. And then I ask all over again to the same four people in different question formats because I don't trust the first response until they've thought it through.

[soulcurrent]

So yes, I do ask--I ask if there's wheat or gluten, I ask if there's soy or dairy. And then I ask all over again to the same four people in different question formats because I don't trust the first response until they've thought it through.

Your snarky cynicism pleases and amuses me.

[Northern Celiac]

I have been diagnosed Celiac. I have two of the main genes and I hit positive on two of the other tests at entolab.com

Fecal Anti-gliadin IgA: 15 Units

Fecal Anti-tissue Transglutaminase IgA: 11 Units

So I have a question...

My symptoms are very insidious - my body just seems to be being affected in subtle ways such as weird pain in my intestines when I wake up in the morning - brain fog - etc... but no MAJOR reaction such as sick/diarrhoea etc.

My question is, do I need to be super strict about cross contamination

For example the idea of following the directions on this post is depressing for me!

https://www.celiac.com/articles/21587/1/Tra...ants/Page1.html

Since I just have slow burning insidious symptoms couldn't I just order a grilled salmon and hope for the best?

All advice much appreciated.

Hi, I would be. I have a severe case of celiac disease and I have to be strict. For instance I can get sick from licking a postage stamp or an envelope. Having celiac disease has made me a way better cook as well, From what you say in your post you have a fairly mild form of celiac disease. Since I have contracted celiac disease I have done alot of research into the disease. DO NOT fool yourself you must give the respect it deserves , ppl with celiac disease are more likey to contract a terminal illness. The only way to prevent this is to stay on the gluten-free diet strictly. If you do like to eat out check with your local celiac association or chapter. Mine in Calgary Alberta provides a list of Gluten Friendly restuarants. The Big thing to remember is that it's your health. When I go out to eat I always phone ahead to ask. And when I am there I question the server as well. If they do not provide you with a good answer get up and walk out.

Books to read

The gluten free bible

Dangerous grains

Celiac Disease and living gluten free

Best of luck

Mike

[Ahorsesoul]

Your snarky cynicism pleases and amuses me.

I do this too. I just don't believe them the first times. I was asking a butcher if the brats contained wheat or gluten. Without any hesitation he said absolutely not, how many do you want. I kept asking him if he was sure there wasn't any wheat, gluten, bread crumbs or spice mixture in the brats. Finally he got tired of being patience with me and says "lady there is no type of sugar in our brats". He might know meat but not much else. lol

[mushroom]

Finally he got tired of being patience with me and says "lady there is no type of sugar in our brats".

It's amazing the number of people who confuse gluten with glucose, having never before heard of gluten Fortunately I just look for the gluten free label and then ask if they have soy in them!

[AKcollegestudent]

I kept asking him if he was sure there wasn't any wheat, gluten, bread crumbs or spice mixture in the brats. Finally he got tired of being patience with me and says "lady there is no type of sugar in our brats". He might know meat but not much else. lol

I want to be shocked and surprised, but I'm really not. If I had a dollar for every instance where someone mixes up gluten with glucose or MSG, I would be able to splurge on the shoes I have my eye on.

(And yep, I tend to be cynical. I'm allowed--my fellow humans keep being annoyingly idiotic.)

[soulcurrent]

(And yep, I tend to be cynical. I'm allowed--my fellow humans keep being annoyingly idiotic.)

Hearty agreement.

[momxyz]

I have been diagnosed Celiac. I have two of the main genes and I hit positive on two of the other tests at entolab.com

Fecal Anti-gliadin IgA: 15 Units

Fecal Anti-tissue Transglutaminase IgA: 11 Units

So I have a question...

My symptoms are very insidious - my body just seems to be being affected in subtle ways such as weird pain in my intestines when I wake up in the morning - brain fog - etc... but no MAJOR reaction such as sick/diarrhoea etc.

My question is, do I need to be super strict about cross contamination

For example the idea of following the directions on this post is depressing for me!

https://www.celiac.com/articles/21587/1/Tra...ants/Page1.html

Since I just have slow burning insidious symptoms couldn't I just order a grilled salmon and hope for the best?

All advice much appreciated.

hi sparky,

I do understand the temptation to "try to get away with it" as my own symptoms are pretty much limited to a skin rash, that is healing on a gluten free diet. Tho in retrospect, I always considered a certain amount of flatulence "normal".

anyhoo, you do have to be careful. As others have pointed out, the tendency is, that the longer you stay gluten free, the more noticeably you will react to gluten. but, not staying gluten free is not an option, since you know you will be incurring bodily damage, even tho you may not suspect it.

I will offer two examples from my own experience. After approximately a month and half on the gluten free diet, I was at a work meeting where the only offerings for lunch were sandwiches. I tried to "get away with it" by picking out the meat,cheese, lettuce and tomato away from the roll and eating that. The next day I had diarrhea and the day after that, my rash itched and burned like crazy.

I am now a little more than 2 1/2 months gluten free. This past Friday I was at a family funeral and a buffet lunch afterwards. I did not know the location of where we were eating and so had no chance to check with the restaurant ahead of time. I went thru the line and selected roast beef, aspargus spears, and roasted potatoe. No gravy. My only mistake was taking the salad. I did not see anything but greens and veggies, so I took some. Back at our table I saw that others who had partaken of the same salad had croutons in theirs. They weren't in a separate container on the serving line, so they had to be all in the big bowl. Unfortunately I had already eaten the salad when I noticed this. Tonite my almost healed rash is itching again, which is very frustrating to me. I do believe I experienced cross contamination from that salad. Two months ago I wouldn't have believed I would have to be this careful, but there it is. (note to self, avoid salads in buffet lines.)

On the other hand, I have had a very positive dining experience out with friends earlier this past month. We had picked the resaurant ahead of time, so I had time to look up their menu ahead of time, figure out what I would like to order, and then I contacted the restaurant. They were familiar with gluten free needs, and I told them day and time of our reservation. They also assured me that me menu selections were not prepared with any ingredients that contained gluten. So I had an awesome meal and a very good time with friends, and absolutely no ill effects afterwards. BTW, my entree selection was salmon.

[sparky2222]

Well all I can say is this is all very depressing

I guess I'm going through the Grief stage of denial...

[mushroom]

Well all I can say is this is all very depressing

I guess I'm going through the Grief stage of denial...

Go ahead and grieve, Sparky. We all do it. I am currently grieving for eating out at all!!! I practically have to ask, "Is there any food in this food?"

[positivenrgfairy]

Well all I can say is this is all very depressing

I guess I'm going through the Grief stage of denial...

That was me like 2 weeks ago!

I thought I could get away with just not eating the obvious stuff like bread and pasta, but getting sick from teensy cross contaminations in the past week woke me up.

what comes after denial anyway?

[mushroom]

what comes after denial anyway?

Acceptance

[soulcurrent]

Acceptance

I think I'm in the guilt/anger stage now.. still a bit until acceptance.

• Shock or Disbelief
  
• Denial
  
• Bargaining
  
• Guilt
  
• Anger
  
• Depression
  
• Acceptance and Hope
  

[sparky2222]

Nope! Denial is #1

Open Original Shared Link

1. SHOCK & DENIAL

2. PAIN & GUILT

3. ANGER & BARGAINING

4. "DEPRESSION", REFLECTION, LONELINESS

5. THE UPWARD TURN

6. RECONSTRUCTION & WORKING THROUGH

7. ACCEPTANCE & HOPE

Like I said. I'm @ #1...

Actually maybe I'm @ #3! Judging by this thread I'm bargaining....

[soulcurrent]

Nope! Denial is #1

Open Original Shared Link

1. SHOCK & DENIAL

2. PAIN & GUILT

3. ANGER & BARGAINING

4. "DEPRESSION", REFLECTION, LONELINESS

5. THE UPWARD TURN

6. RECONSTRUCTION & WORKING THROUGH

7. ACCEPTANCE & HOPE

Like I said. I'm @ #1...

Actually maybe I'm @ #3! Judging by this thread I'm bargaining....

Various websites put them in various order, and various people experience them in various order. I found the one that matches mine.

[sparky2222]

Various websites put them in various order, and various people experience them in various order. I found the one that matches mine.

Oh I wasn't saying Nope to you, it was to a few threads earlier

[CGally81]

I think I'm in the guilt/anger stage now.. still a bit until acceptance.

• Shock or Disbelief
  
• Denial
  
• Bargaining
  
• Guilt
  
• Anger
  
• Depression
  
• Acceptance and Hope
  

Cling on to hope. The vaccine/cure against Celiac has been tested successfully on mice, and is currently being tested on humans, in Phase 1 (safety) testing. We could get our day yet!

[AKcollegestudent]

what comes after denial anyway?

A really accommodating Indian place? My local Indian restaurant is pretty much the only place I can get away with eating out at because they use chickpea flour instead of wheat and there's less risk of CC.

(This could also be called acceptance. I prefer to think of it as moving on wisely. Besides, there's lentil doughnuts. Whose stage of grieving can't be helped by gluten-free lentil doughnuts?)

[AKcollegestudent]

Cling on to hope. The vaccine/cure against Celiac has been tested successfully on mice, and is currently being tested on humans, in Phase 1 (safety) testing. We could get our day yet!

Okay, seriously? As someone who has a celiac diagnosis on file, but who went completely gluten-free because of (but not limited to) severe migraines, neuro symptoms, and depression? (All of which could be celiac, but could be tied to other issues as well.) I would/will probably choose not to accept this "cure" because it isn't going to help all my issues. A vaccine form of the "cure" isn't going to work for me most likely, even if I wanted to go that route. Medications aren't processed by my body correctly most of the time. I already know this. I don't need this one going haywire. And I'm starting to get really sick and tired of hearing you keep bringing up this "cure" when as far as I'm concerned the only cure that's going to make a difference in my life is the diet. It took my body almost three months to adjust to being gluten-free; I can only imagine how long it would be screwed up if influenced by the vaccine.

Yes, I get it. There's a reason to hope. But for me? It isn't this magic pill you keep touting. The reason to hope is the fact that the gluten free market just keeps better; the food quality has improved drastically since the first time I went gluten free almost 13 years ago. The reason to hope is that there is an entire community who gets what you're going through. The reason to hope is that moment when your body starts responding to the gluten free diet.

I'm not saying that the vaccination/cure might not help some people; I'm just saying that for those of us who probably don't want to use it or cannot use it, hearing it brought up is annoying at best. And I'm not trying to attack you; part of the tone comes from too many years of sarcasm and part of it is me being completely frustrated. From where I'm standing, after incredibly poor health, this was the only thing that worked. And I know this is something you need to/want to cling to, but I'm asking you to realize that not everyone is ecstatic about this proffered "cure".

Edited to be a bit less angry sounding and a bit more reasonable.