Levels of Sensitivity

[nuigini]

Posts often talk about the need to have separate toasters, bread boards, utensils, etc. Is this the case for everyone diagnosed with Celiac, or are some more sensitive than others?

[Cooper27]

Some are definitely more sensitive than others: for example the threshold to be considered "gluten free" in the UK, is that food must contain less than 20ppm of gluten. For approximately 10% of coeliac's, that threshold is too high, and so they can still get sick from eating "gluten free" food.

I regularly go to a local coeliac group and meet a lot of people there. I've only known 1 person to not get sick from sharing a toaster with his wife (although I don't know if he's had his antibodies retested to see whether he's getting a reaction from that).

My work colleague's daughter is also coeliac, and he said her sensitivity lessened the longer she was on her gluten free diet too, so it can even vary for an individual with time. She still has to have some separate cooking utensils and her own butter.

[nuigini in reply to Cooper27]

Thanks Cooper. I asked the question because I never felt really sick or terribly uncomfortable when eating gluten. Granted the mild nausea and occasion cramps have disappeared.

I haven't taken the extreme steps that others require and I consider myself OK, not feeling sick relative to celiac symptoms.

[Cooper27 in reply to nuigini]

Symptoms of eating gluten vary from person to person too: I know one person whose only symptom is joint pain, and I've read of people who just get a mild rash. Plus there's a thing called "silent coeliac" where you can get no symptoms at all. Unfortunately the same damage is being done on the inside, regardless of the outward symptoms...

[Regalbirdy]

I would suggest that it’s for everybody diagnosed with Coeliac Disease, no matter the severity of sensitivity.

At least that was the strong recommendation I received when I was diagnosed as a Coeliac - which was given by a qualified dietician.

[atariste in reply to Regalbirdy]

I too wondered about the different extremes of symptoms. I was diagnosed a few years ago and would say the major improvement I found from a GF diet was feeling less tired! Even now if I deliberately gluten myself with (a rare) KFC or McDonalds meal I seem to get a very mild reaction with maybe a little bloating.

Makes you wonder if there should be different "gradings" of coeliac diagnosis? I should point out that I DO follow a strict GF diet the vast majority of the time and DO NOT advocate anyone else deliberately glutening themselves!

[virgolizzy]

I think there are different levels of coeliac. My Mum sometimes chooses to eat something containing gluten & is not floored by it. Another friend is so sensitive if she has a crumb, she is floored for days.

I think it is up to the individual to work out their level of sensitivity & how far they need to look at cross contamination & the price they are willing to pay if they chose to eat gluten. As for me, I would never choose to eat gluten, not willing to take the risk but I also share a toaster with my hubby who can eat gluten, but we always use different sides & I don’t have different utensils etc....but I consider myself very lucky that I don’t have to take it to the endth degree. I also have my ttga’s tested annually to ensure I am well well below the limits.

[nuigini in reply to virgolizzy]

That sounds like the same approach I'm taking at the moment.

I asked the question because all I seem to or read is don't risk eating a crumb.

[BabsyWabsy]

I am not coeliac, but I am very sensitive to modern wheat and its derivatives, to the extent that I had some hot smoked salmon recently, no wheat listed in the ingredients, and I had a reaction. I contacted the company and it turned out they used a flavouring which contained a wheat derivative. The quantity must have been so small as to be at molecular level. Because of this, I am very careful about preventing cross contamination at home and I am very cautious when eating out. The company has since amended their labeling to highlight the presence of wheat. Strangely, I find I can cook with spelt flour (ancient wheat) with no issues. We are all peculiar in out own way.

[CATRYNA49]

In our household of 7, my granddaughter and I are Celiac. She and I have our own toaster on one side of the kitchen and the rest of the family have a toaster on the other side of the kitchen. She and I have our GF frozen food in one refrigerator freezer, so no one else gets confused and eats our food. We also share a refrigerator shelf and cupboard that is exclusively ours. When it comes to condiments, etc, we have our own separate ones from the family. Whatever is shared; (which we try not to do) no one is allowed to double dip with a knife when making sandwiches, etc

[esteloca]

Hi I was diagnosed with celiac disease over a year ago and know how confusing it is! My Dr's aren't much help & I never had typical symptoms either but studies show that cross contact/trace amounts of gluten causes intestinal damage & immune response in everyone with celiac disease regardless of symptoms! So yes, we all are that sensitive even if it doesn't seem like it.

I had a very hard time accepting that because it didn't seem possible for something invisible such as gluten on a hand towel or counter top that appeared to be clean, to keep me sick but we all must accept it and adhere to the "rules" in order to be well.

It helps me to remember that things like just not feeling well or a headache or fatigue or feeling down /depressed,not wanting to get out of bed etc. can be symptoms too...and I want to feel my best. Also by not adhering to that strict of a gf diet, we're upping our chances of certain types of cancer and other things we don't want. So anyway, I wish you and everyone here the best! Stay strong ppl 💪

[nuigini]

Thanks so much to all of you who took the time to respond, you've given me a lot to think about.

I sincerely wish I could get the biopsy done to confirm the diagnosis of celiac disease. As I've said in other posts I'm looking at a wait time of 2 years at present.

[Ell17 in reply to nuigini]

I thought I would offer a different perspective (since you are still undiagnosed).

Though I have Celiac's, the diagnosis itself didn't change a thing. Regardless of whether you are gluten intolerant or Celiac, the treatment is the same: Strict avoidance of gluten (and other foods that can cause a cross reaction.) My feeling is that when you are already aware that gluten causes you serious issues, just go ahead and do now what you are going to have to do two years down the road, (IF you can even get a diagnosis. It's much more difficult to get than you might think.) And start to feel better, now. I also want to mention that you will still need to be eating gluten up until test time so there will be a lesser chance of skewed results. Do you really want to be in misery waiting two years for the often times illusive Celiac diagnosis??

It would be different if you had to have a diagnosis to receive a certain treatment. But, there is no pharmaceutical treatment, only avoidance of the offending substance. I certainly would not delay starting the readily, and ONLY, available treatment that requires no Rx, I might add, waiting on an oftentimes unreliable diagnosis process. (Of course, in the US our health care isn't set up like yours. So, it's expensive to chase a diagnosis.)

Many health issues are due to inflammation triggered by diet and gut issues. An elimination diet is the gold standard. If you remove foods, feel much better and then the doctor tells you that test results show you don't have a problem with that food, what are you going to believe.... your body or a test that can be unreliable at best??

So that's my two cents worth on the topic......

All the best.😊

[nuigini in reply to Ell17]

Thanks for your two cents Ell17. Actually, I did go gluten free after receiving the diagnosis based on off the chart Celiac positive blood tests. If I ever get scheduled for a biopsy and decide to got ahead with it I know I'll have to do the 6 week gluten challenge and go back on a gluten containing diet for 6 weeks prior to the test.

I noticed some positive changes about a month after going GF. Less bloating and gas, less nausea and cramping with bowel movements. These symptoms only developed about two years ago, however, I have had loose bowel movements for over 30 years, previously diagnosed as IBS. That hasn't changed much, nor has the frequency, which is regular and not at all a problem.

Of course I had all the required metabolic tests done, B12, iron, bone density , etc. and all were fine. I've maintained the same body weight (over weight) for over 30 years give or take a few pounds. Does that all mean the celiac gene only recently activated? I guess the only way to know is to assess the damage through biopsy. I'm 70 years old and consider myself fortunate not to have suffered much worse symptoms. I will be 72 if I wait, and reach, the designated wait time! If I end up waiting that long I may decide what' the point.

I will stay on the GF diet in the meantime.

[Ell17 in reply to nuigini]

You are indeed fortunate that your life wasn't turned upside-down by this much earlier on. If it had to be activated, much better farther down the line, I should say. I'm glad that you aren't at present suffering the worst that this condition can throw at you.😊

[dobido]

It should be for everyone cause of cross contamination I have it really bad I had cut out everything with gluten 3wks before my blood test and my result was such a high level then I had to have gluten before the biopsy then it was off the scale but I recommend separate toast I even have a separate frying pan so no cross contamination and separate knifes etc