TGK112

I went for Thai food for the first time since diagnosis. They cooked my meal with fish sauce which is gluten free.

This is also my first Thanksgiving gluten free. Any idea how to make green bean casserole. Cream of mushroom soup seems hard to come by, and french fried onion rings are out.

I guess what I am asking is more about internally. I realize that we all have different reactions - from none - in my case - to severe. What I'm wondering is - do we all have different degrees of internal damage? Does one person get inflamed by a speck of gluten, while it may take another person a slice of bread to get the same amount of inflammation?

I have been gluten free for about 6 weeks now. I never had typical symptoms prior to going gluten free - except for osteoporosis and weight loss ( about 10 pounds in the past year). I eat out about 2 -3 times a week - and have been careful to explain to the servers that I am on a gluten free diet. I have never felt sick after eating out ( but I didn't feel sick prior to being gluten free) What I am wondering is - are some people more prone to issues with cross contamination than others?

I don't know if I am less sensitive to cross contamination or I just don't get that immediate reaction?

I went to Gracies 5 in Redmond, WA last night. The entire menu was gluten free - and many items were dairy free as well, The food was delicious - for the two of us who are gluten free as well as for the two people in our group who are not gluten free. What a pleasure being able to order anything I wanted!

We had a guest come to town - and wanted to take him to a classic Seattle restaurant. I'm newly diagnosed with celiac, so I explained to the server my dietary restrictions - and he came back with an already printed fairly extensive gluten free menu!

I have had the same experience. What led me to being diagnosed was osteoporosis. I was shocked when I tested positive since I have never felt ill by eating gluten. It makes me a bit nervous - I feel that I am a very poor "barometer" - never knowing if I am accidentally eating gluten. I have just reached my 4 week mark. I am anxious to be tested again after 6 months to see if there has been any improvement. It's very difficult to know if I am truly gluten free.

Welcome, TGK, and yes, unfortunately when it comes to celiac/gluten, confusion reigns supreme.

First you should know that if it is covered at all in medical school, it occupies maybe 2-5 minutes (just guessing here, but there is so much for a would-be doctor to learn and it gets short shrift). Someone told me the other day that medical knowledge is doubling every five years, so that makes a lot to cram into medical school. NOT, that I am excusing doctors, because there has been a big push in Continuing Medical Education (CME), particularly aimed at gastroenterologists, to inform about celiac now that it has been "discovered" that it is not a rare disease found in failure-to-thrive children.

Without testing your levels of Vitamin D, you PCP is incorrect in stating that celiac has nothing to do with osteoporosis. Celiac is a primary cause of low levels of D, and without D (and calcium and magnesium) your body cannot make new bone. Since celiac is a disease of malabsorption (hence the failure to thrive in children), most celiacs if they have been suffering for any length of time end up being deficient in many vital nutrients.

Your bone specialist was following the standard diagnostic path for celiac disease -- blood tests, endoscopy with biopsy. If diagnosis confirmed, test for nutritional deficiencies. If not confirmed, eat gluten free.

Your gastroenterologist, who should have been the most informed. was not all that helpful. If your test was a false positive (very rare) then what caused it? And a trial of the gluten free diet should be recommended to see if it helps. Of course, since you believe you have no other symptoms it would be hard to quantify if it were helping if you did not take the additional supplements. Fortunately you were spared this confusion with a positive biopsy.

Unfortunately, although one would expect it, your story is not at all uncommon (sorry ).

Incidentally, there are diverging opinions on the merits of the so-called bone-building drugs like Fosamax. One school of thought holds that the quality of bone made is not "real" bone, and does not have the same architecture and strength as normal bone. You might explore this further. I know that doctors prescribe "medicines" for everything, but it could well be that if you took the right supplements once you are rid of the gluten you could make better bone than the Fosamax helps you make. It is worth exploring via Mr. Google. It is interesting that osteoporosis is your only symptom (that you currently know of). You should have all your nutrient levels checked - B12 and other B's, A, E, K, ferritin/iron, folate, magnesium, zinc, manganese. Your PCP could order these but perhaps given her attitude it would be better to ask the gastroenterologist.

I wish you the best in restoring your bones to their former strength, and be sure to ask for any help you need in following the gluten free diet.

Thank you - your response is very helpful. Although I am not happy with all the doctors' conflicting advice - it is somewhat nice to know that I am not alone.

Ditto the above posts. It's tough. Here's what we do in our family below: (Note that we have one child who can "sense" wheat/gluten when she's about to take a bite of something cross-contaminated--yes, weird, but also incredibly amazing. Also note that our other little kiddo will GORGE on anything cross-contaminated and then have a near-immediate neurological response aka "losing" it meltdown/tantrum). Biggest note of all: this is our personal approach and not a recommendation. I hope it just gives you one more perspective.

Fruits/veggies/salsas/sauces: we check ingredients VERY well and generally are ok with all producers (including Trader Joe's).

Breads/crackers/cookies: we almost always go for "dedicated" line or "dedicated facility" or major large brand name because gluten can stay airborne for up to 24 hours (and we have been glutened by a product from a small facility). Note that we feel comfortable with the WF brand but we do NOT feel comfortable with the TJ brand.

Meats/Cheeses/Milk products: we generally buy the high end organic products in this segment. We double check ingredients on meats especially closely. There are very few small brands in these categories, so we end up with Applegate Farms very often and have been fine to our knowledge. We rarely buy the store brands.

Here is an example using ice cream:

- We buy the major name ice creams (I wish I could support local producers, but I 1) don't trust that they've gotten all the cookie dough out of every nook and cranny of their machinery and 2) they make things in smaller batches). Even though Ben and Jerry's may produce their cookie dough ice cream on the same line as the vanilla ice cream, I trust that they have hard-core cleaning protocols and that their batches are so large that any gluten residue is probably so diluted that it won't affect us).

- We check the ingredients for all the obvious things: like anything that looks like a cookie (graham cracker, etc.)

- All this said, we make a MAJOR exception when we visit the East Coast/Cape Cod and go to Sundae School, a small, family-owned ice cream shop. Our cousins also have Celiac, know the owners, trust the owners and we only buy the prepacked flavors...all of us have been healthy so far there...

Note on teas: I am personally trying to figure out the teas and haven't so far...my quick "grab and go" has been iced tea in the past, but I recently had a super-low-energy week and realized I need to be more thoughtful about what I'm drinking. I have a few phone calls to make...

Which brings me to my final piece of input: the customer service folks at the 800 numbers on the back of packaged goods are generally quite good. I have made countless phone calls to figure out whether or not a product is ok.

Ok, one more input...Also, there are two apps you might consider: "Is That Gluten Free" and "Gluten Check" for smart phones.

Thinking of you! It gets easier!

Thank you so much for such a helpful response. I - surprisingly - have no typical symptoms of celiac. I wound up getting diagnosed due to worsening osteoporosis. So, because I never felt ill from eating gluten - I feel that I am a very poor "barometer" in knowing when gluten may be in a product. I keep saying " the good news is that I never had symptoms, but the bad news is, I never had symptoms" I will never know when I may be accidentally ingesting gluten. So, thanks for the helpful guideline

I'm big fan of Trader Joes. I'm very newly diagnosed - just 3 weeks. I nearly had a melt down during my first trip to Trader Joes, seeing many of my favorite products that I can no longer enjoy. However, I printed out their gluten free list and was surprised to see that some of the products that they list as gluten free - and have a "g" on the labeling, also have a disclaimer on the same label saying " made on the same machinery as...wheat..."

I brought this to the manager's attention- he seemed surprised as well. Anyone else run into confusing labels? Which part do we believe?

Here's my story: As a 56 year old I've been losing bone density over the last couple of years despite taking calcium, vitamin D, and Fosamax. I went to a bone specialist who ordered up some tests to see if anything else may be contributing to the osteoporosis. My levels for gluten antibodies came back very high. I had no symptoms besides the bone density issue except for some weight loss ( about 10 lbs) over the last year. Interestingly, over the course of the past 3 months, I've had three doctors giving me drastically different advice. The bone specialist suggested an endoscopy and biopsy, feeling that if it was celiac, he would know that there was a malabsorption issue going on, and if it wasn't celiac, he would still consider me to be gluten intolerant, but that it would not be a contributing factor to the osteoporosis. I went to my primary physician with this information, and she said that considering my blood test results I should go gluten free and not bother with a biopsy. She said that I would feel better - even though I told her that I didn't feel bad! She disagreed with the bone specialist, saying that gluten intolerance or even celiac had nothing to do with osteoporosis. By this time I had done enough reading/research to know that she was wrong! Then I had my gastroenterologist consult. I asked him what if the endoscopy comes back negative? His reply was that I should not bother going gluten free, that without symptoms it may have just been a false positive blood test. I did have the endoscopy, and the gastroenterologist was easily able to see and confirm celiac. Has anyone else had such confusion?