[Imanistj]

My closest friend and I are both retired RNs. When I was told I had celiac I did hours of research on the web and found that almost everyone contributing to a forum believes that minute amounts of gluten, as in CC, are important enough to avoid at all times. Issues like cutting my food on a board that is also used to prepare food with gluten, grilling on a surface with gluten residue, salad that has had croutons in or on it, or other CC in the kitchen due to using "contaminated" utensils are examples of encountering gluten in my "gluten-free" order are beyond my friend's comprehension. This is a lady who fully understands medical sterile technique, but if it ain't a germ she refuses to believe it can matter. I have an irritable bowel and have had it all my adult life (I am now 65) but it has never been as severe as sprue. I have been on a strict gluten-free diet for six weeks and don't see any improvement in my many symptoms that are considered possible expressions of celiac disease. If I were "glutened" in a restaurant I wouldn't know it so I am observing avoidance of CC on faith. I need proof in respected medical journals that minute amounts of gluten are harmful and must be avoided. My doctor was no help. I was told by an office nurse on the phone that I needed to see a dietitian and go on a gluten-free diet. Absolutely NO discussion of how to follow a gluten-free diet has come from my doctor or his staff. I learned everything I know from the internet. I haven't seen a dietitian because I am a nurse and I have found plenty of information on the net. Also, I have read that some people got very little help from the dietitian--all they received were some handouts and it didn't appear that the dietitian knew any more about a gluten-free diet other than the handouts. I don't know exactly what I believe because I have a positive transglutaminase and genetic tests but a negative biopsy. I am staying on the gluten-free diet because I am still hoping I will eventually feel better. For now, I avoid CC and my friend continues to think I am reacting to my diagnosis hysterically.

So, if any of you have been told by your celiac specialist that CC is a big issue, or if anyone comse across a journal article of a double blind experiment to measure the importance of CC, please let me know.

Thanks.

[Jestgar]

Why do you need to prove this to other people? What you choose to eat is up to you.

[tarnalberry]

Peanuts aren't a germ, but would she let a crumb of peanuts go onto the food of someone with an anaphylactic peanut allergy? Not if she's smart.

This isn't about *infecting* you; this is about chemistry. It is the presence of the necessary molecules that causes a chemical reaction to happen. It's not necessary to have a *lot* of reagent in order for the reaction to happen, and once the celiac chemical cascade has started in your intestines, that chemical reaction is self-sustained for up to two weeks.

While I would argue that it's true - one molecule of gluten may cause a reaction, but the reaction will be small enough that the damage done to the intestines can be "repaired" in about the same time the damage is done. But you're never going to get ONE molecule of gluten. You'll never get only 100 molecules of gluten. How many molecules does *YOUR* body need before the rate of damage is higher than the rate of repair? Honestly, no one can answer that question, and it will vary not just from individual to individual, but from time to time in the same person. So, the only way to maintain our health is to avoid any contamination we can. We will *never* avoid every single molecule of gluten. But if we avoid everything we can, maybe we'll find ourselves on the "heals faster than is damaged" side, rather than the "is damaged faster than heals" side of things.


All that said, Jestgar is quite right.

[GottaSki]

When I was newly diagnosed I mistakenly believed that once I was gluten-free and healing, small amounts of accidental gluten wouldn't hurt -- after all I'd been ingesting large quantities my whole life -- how could a tiny bit hurt here and there. Boy was I wrong. I have been glutened by cc at three different restaurants where I had ordered items that on there own are gluten-free. These reactions were similar to my two major blunders where I knew I had ingested gluten. Turns out everything I read regarding becoming more sensitive to gluten once on gluten-free diet is true - for me.

I have read that some are less sensitive, I do not know what determines this.

Not sure how long you've been gluten-free -- those first few months my whole family felt like we were being paranoid, but it became much easier as the months rolled along.

[jerseyangel]

tarnalberry, on Nov 15 2009, 11:56 AM, said:

Peanuts aren't a germ, but would she let a crumb of peanuts go onto the food of someone with an anaphylactic peanut allergy? Not if she's smart.

This isn't about *infecting* you; this is about chemistry. It is the presence of the necessary molecules that causes a chemical reaction to happen. It's not necessary to have a *lot* of reagent in order for the reaction to happen, and once the celiac chemical cascade has started in your intestines, that chemical reaction is self-sustained for up to two weeks.

While I would argue that it's true - one molecule of gluten may cause a reaction, but the reaction will be small enough that the damage done to the intestines can be "repaired" in about the same time the damage is done. But you're never going to get ONE molecule of gluten. You'll never get only 100 molecules of gluten. How many molecules does *YOUR* body need before the rate of damage is higher than the rate of repair? Honestly, no one can answer that question, and it will vary not just from individual to individual, but from time to time in the same person. So, the only way to maintain our health is to avoid any contamination we can. We will *never* avoid every single molecule of gluten. But if we avoid everything we can, maybe we'll find ourselves on the "heals faster than is damaged" side, rather than the "is damaged faster than heals" side of things.


All that said, Jestgar is quite right.

Both of the ladies said it very well.

That said, what also happens for some is that the longer we are gluten-free, the more sensitive we get to tiny (microscopic) amounts. Damage aside, this can cause symptoms the same or even worse than before we were gluten-free. Like Tiffany said, the reaction can last to two weeks, and in some, so can the sometimes debilitating symptoms.

For example, I've had a follow-up endscopy with biopsy (after 3 years gluten-free). I'm super sensitive and do still get reactions when trying a new processed product, eating out, etc. (although those occurrences happen much less as time goes on) but my follow up biopsy was completely normal. No visual damage to my intestine, but the symptoms still happen and I strive to do without the D, fatigue, anxiety, nausea, etc. Quality of life is also important.

[GottaSki]

jerseyangel, on Nov 15 2009, 09:44 AM, said:

For example, I've had a follow-up endscopy with biopsy (after 3 years gluten-free). I'm super sensitive and do still get reactions when trying a new processed product, eating out, etc. (although those occurrences happen much less as time goes on) but my follow up biopsy was completely normal. No visual damage to my intestine, but the symptoms still happen and I strive to do without the D, fatigue, anxiety, nausea, etc. Quality of life is also important.

That is great news...sure made me smile to read! Curious...was this your first endoscopy since your diagnosis?

Sorry to hijack the thread -- just was very nice to hear of confirmed healing!

-Lisa

[GFinDC]

Celiac is an immune system response. Once the body learns to make antibodies to an antagonist it doesn't forget that response. If it did we would never be immune to any disease. So, you get a little germy visitor in your system and your body creates antibodies to attack it. It doesn't say, well maybe I won't bother because it's only a little bit of a germy-wermy and it couldn't possible cause any harm. We'd all be dead if our immune systems thought like your friend. So the body makes the antibodies and attacks the offender, even little bits. Most germs are pretty durn small after all. People don't go around purposely eating handfuls of germs and yet our bodies still fight them aggressively. In this case our gut lining is attacked, or some other organ in the body. Maybe ask your friend if she would eat a crumb of measles or h1n1 and see if she if thinks that won't affect her. After all it's just a little bit, what could it hurt? The immune system won't react to just a little germy crumb right?

[ravenwoodglass]

GFinDC, on Nov 15 2009, 10:46 AM, said:

Celiac is an immune system response. Once the body learns to make antibodies to an antagonist it doesn't forget that response. If it did we would never be immune to any disease. So, you get a little germy visitor in your system and your body creates antibodies to attack it. It doesn't say, well maybe I won't bother because it's only a little bit of a germy-wermy and it couldn't possible cause any harm. We'd all be dead if our immune systems thought like your friend. So the body makes the antibodies and attacks the offender, even little bits. Most germs are pretty durn small after all. People don't go around purposely eating handfuls of germs and yet our bodies still fight them aggressively. In this case our gut lining is attacked, or some other organ in the body. Maybe ask your friend if she would eat a crumb of measles or h1n1 and see if she if thinks that won't affect her. After all it's just a little bit, what could it hurt? The immune system won't react to just a little germy crumb right?

The first sentence here explains it the same way that I would. Once your body starts the antibody reaction those antibodies are going to start a cascade thoughout the entire system. Celiac is an autoimmune mediated disorder and it only takes a very tiny amount to start that antibody reaction going again, especially in the beginning when there are still large numbers of the antibodies still present in the system. It not like someone who gets an upset stomach from simply eating too much of something.

[WW340]

First of all, I agree with others, you should not need to explain this to a friend.

Secondly, your friend needs to brush up on physiology to fully understand what is happening in your reaction to gluten.

The issues created are at the molecular level, and it is the proteins of gluten causing the problem. Since it is an immune response, the smallest of particles can set off the reaction like in an allergic reaction. That is why some GI's will even refer to this as a gluten allergy. It is allergy-like in the mechanism, but it is mediated through different pathways and mechanisms.

Here is an article that explains the reaction in decent detail. There is also a discussion about how little an amount is acceptable, and that this amount keeps going down. Now it is not known if there even is an acceptable level of cross contamination whether a person has reactions or not.

University of Maryland article by Dr. Fasano

Quote from the article -

One of the major controversies in the treatment of
celiac disease relates to the amount of gluten allowed in the diet of
celiac disease patients. The National Food Authority has recently
redefined the term “gluten-free.” Previously, ,0.02%
gluten was considered gluten-free, but gluten-free now
means no gluten, and ,0.02% is currently labeled “low
gluten.” However, the stringency of gluten restriction
(zero tolerance versus low gluten ingestion) is an issue
that is far from being resolved because opinions differ
among scientists and celiac disease support groups worldwide.
These controversies are attributable to a lack of solid
scientific evidence for a threshold of gluten consumption
below which no harm occurs.

[jerseyangel]

GottaSki, on Nov 15 2009, 01:22 PM, said:

That is great news...sure made me smile to read! Curious...was this your first endoscopy since your diagnosis?

Sorry to hijack the thread -- just was very nice to hear of confirmed healing!

-Lisa

Hi Lisa,

Yes, it was the first since diagnosis. I had moved to another state and my new GI wanted to do one and I was curious. Glad it made you smile

[Ahorsesoul]

"I'll have a grilled cheese sandwich--hold the bread."

Here's the recipe for your grilled cheese sandwich:
http://cheese.about....esan_crisps.htm

[Imanistj]

Thanks to all for the advice and information.
WW340, the journal article is exactly what I needed. I do feel I have to "educate" my friend to prevent her from believing I am some kind of hypochondriac. I know she has been thinking I am far too worried about CC but the journal information explains it all. There are plenty of people who might think I am a nut and I really don't care, but to have a close friend think so could be detrimental to our friendship. I don't want to be tolerated!

[ang1e0251]

You had such great responses to your questions I have nothing to add. But I was concerned that you are not feeling better yet. How long have you been gluten-free? Are you willing to explore why you aren't improving while on the diet?

[Swimmr]

I don't know if it's just me, but my best friends don't question me or think I'm hysterical when it comes to my own health.

Maybe just a firm talk (regardless of how knowledgeable each of you are, putting medical background aside) and letting her know that she can have her opinions if she wants, but to please keep it to herself and if she needs proof, then she's the one who is hysterical. There are SO many questions and differences in opinion in the medical field as it is, why stress someone over having no proof that CC is an issue?

If you are hysterical, then we all are and if being hysterical keeps us sane, then so be it!

[Imanistj]

Angel0251,

I tried to find all my previous posts but I am computerdyslexic and finally gave up. The briefest explanation I can make is:

Chief Complaint, went to my fibromyalgia doctor--Severe muscle pain and weakness along with profuse sweating of head and face, plus exhaustion that develops after a brief period of any physical exertion. I can't do my own yard work. The fibro doc ordered many blood teats that might explain my symptoms. All were negative except the sedimentation rate (a nonspecific indication of inflammation) and a positive test for autoimmune liver disease (AID).

Asked for a consult with a hepatologist. Saw a respected gastroenterologist/hepatologist. His tests turned up a positive transglutaminase and very strong genetic indication of possible celiac disease.

This doc said and did some confusing things: He told me to go on a gluten-free diet before he did the biopsy. I am a retired RN and I had been researching both AID and celiac disease. When this doc said he was going to do a biopsy I said I would be happy to go off the gluten-free diet. He said I didn't have to but I could if I wished. He said that I would need to be on the gluten-free diet for 6 months before my intestines healed. I did go off the diet and 2.5 weeks later I had the biopsy. He took four specimens from my small intestine and they looked normal to him. They came back from the pathologist as completely normal. I asked about the positive AID test because my liver panel came back completely normal. He thought for a while and said I had a "marker" for AID but I was fine for now. I reminded him that my brother and I have tested positive for lupus but neither of us have it. I wondered if I might have a familial tendancy to have false positives for autoimmune tests. He said my DQ2 and DQ8s were a good enough reason to go on a gluten-free diet. I was told to come back in 6 months and to have blood work every 6 months that addresses vitamin deficiencies, liver function, transglutaminase and other autoimmune indicators.

Note:
I had been very sick with prolonged vomiting spells, some as long as 36 hours, before I had my gall bladder removed laporoscopically on March 31. The surgery was because my GB, although there were no stones, had a 6% ejection fraction when called upon to deliver a dose of bile. All my adult life I have had IBS, but the symptoms are not anything like celiac sprue. After the GB was removed and bile was now trickling into my small intestine constantly my stools were explosive liquid for the first two post op months. Then they settled down to thick liquid stools, sometimes softly formed and periods of constipation.

I don't know if the surgery triggered celiac disease or if the new stool pattern is due to the removal of my GB. When I first was diagnosed with celiac disease the doctor found I was anemic and told me to take an iron supplement. My values were normal after only one month on the iron pills. Was I possible anemic because I had been ill for a long time, and had surgery recently?

Because I never had terrible cramps and diarrhea (except for the immediate post op period) but I do continue with IBS, I don't know if the gluten-free diet is helping. I still have the pain and exhaustion, along with periods of depression, which I have had most of my adult life.

I went on the gluten-free diet in mid August for three weeks, went off for 2.5 weeks before the biopsy, and went back on the gluten-free diet in late September. I am a nurse and an addicted internet researcher and I am confident I am observing the gluten-free diet as much as is humanly possible. I have contacted all my numerous medication manufacturers regarding the gluten-free status of my meds and I am not taking any meds that contain gluten. This included over the counter supplements. Sorry to make this so long, and sorry to any reader who may have read this same tale elsewhere on the forum.

I am not certain I really have celiac disease. I want a second opinion and want to go to either Columbia in NY or Deaconess Beth Israel in Boston. I am on Medicare and AARP and worry that they may not pay for all of the cost of a second opinion. I vacillate between staying on the gluten-free diet until I see the doc in May and learn what my blood work shows. If I don't have celiac disease and I have been on a gluten-free diet, and all my labs come back normal I really won't know for certain if I do or don't have celiac. I may decide to go off the gluten-free diet, wait for whatever length of time it takes for a gluten challenge to work, and seek an appointment at NY or Boston.