moonunit

I love the artichoke/jalapeno dip there, and the Chachi's salsa, and there was an honest-to-goodness gluten-free CAKE AND FROSTING MIX on the shelves recently! I bought one even though I had no need for a cake, just so that I could support their decision to carry something so special for us.

I have a question. Has anyone determined whether the tri-tip (Omaha Steakhouse, I think is the brand, in the black package) is gluten-free? I suspect there's hidden gluten in the marinade, because I have had random reactions twice after eating their tri-tip. I checked the ingredient list and didn't see anything suspicious, but my instincts tell me this is not a coincidence.

If anyone has information on the gluten status of the tri-tip, please let me know! Thanks a million!

Okay, I'm pretty sure I know what you guys are going to say, but I will ask anyway. I have a dilemma.

I have tested positive through Enterolab, and my son has always been a bit fussy by nature (he's 15 months old) so I had him tested as well.

His test came back positive, but look at the numbers:

Fecal Antigliadin IGA 15 (normal <10)

Fecal Antitissue Transglutaminase 10 (normal <10)

Quantitative microscopic fecal fat 54 (normal <300)

So it looks like he's absorbing food okay, and although I know, I know, it's "like a pregnancy test, positive is positive," a 10? That's kind of like... I don't know, is that cutoff number solid as a rock, I wonder now, or a teeny bit arbitrary?

I guess now I'm trying to figure out is which is worse:

- Make his quality of live extremely difficult (one of his first words was "cracker" and he adores cheerios) when he seems to be doing okay absorption-wise and I haven't had him see a doctor yet to confirm or direct his care

OR

- Keep feeding him gluten when I can see that at least one number indicates that it might hurt him in the long run to do so

Right now I think we're in a wait-and-see place, figuring that if he is getting damage, it's minimal or will be later down the road. I would like him to be diagnosed by a doctor but the blood work only happens after age 2, right?

I guess I am mostly just looking for some opinions and some support that this is a tough spot to be in!

Thanks...

Oh, and P.S. -- Now I also wonder if I should have my daughter (age 2) tested. I would have to go through Enterolab because her pediatrician refuses to test her (MY doctors say that the + tests don't count, so since I "don't have anything wrong" my daughter has no family history to warrant testing.) This is getting expensive!

That's awesome, being proactive and talking to a stranger like that! I am trying to learn to be so brave myself.

Also, I'm hoping to put together an article to try to increase awareness along those lines on the Gather site (link in my sig). Something that gets people thinking about how it might be POSSIBLE that their symptoms have a reason and aren't all just random.

Does anyone know if there's a simple information sheet to give people who have never considered the possibility of celiac before? When I talk to people about my own situation I nearly ALWAYS hear that someone shares (or knows someone who shares) symptoms that sound the same, but I nearly ALWAYS hear "but it couldn't be that." And then they never investigate further.

What can we do to get people to at least find out? And what do we do when they go to a doctor who says "nah" before they bother taking a history or doing an exam, as some doctors still do?

Aughhhh, it gets frustrating to think about! We need a gigantic celebrity to publicize the facts, like it says on the other thread. Sigh, there's got to be SOMEone!

I'm sorry to hear you're not getting help from your docs! It is true that not everyone who thinks they have celiac disease/gluten intolerance necessarily has it, but there are a LOT LOT LOT of people who are told by doctors that they don't have it when they clearly do.

My tests (Enterolab, blood work through regular doc) keep coming back positive and the doctors still tell me gluten isn't the issue. Even while holding their own test results with numbers in the positive range in their hands.

I agree with the others. I hate to say it, but with this disease, we have to be our own guides as to what is right. Someday the medical community will catch up with us, but we can't afford to wait until then.

Maybe you could get those child-proofing things that only let you open a cabinet about an inch before you have to use the catch. Less blatantly insulting than a padlock, and if she asks you could just say "I know you forget sometimes that the pans have to stay separate, and I thought the catch would remind you before you accidentally used something."

Food, I don't know what to do. Maybe set something up with her that if she uses an item of yours then it becomes hers and she needs to pay for a replacement?

It sounds like she is not taking this seriously, and that's so frustrating! My family is aware of the "consequences" so they are pretty good about it. This might end up being a situation where you can't live together, unfortunately.

good for you moonunit... it's quite the revelation when we realize that Dr.s don't know OUR bodies as well as WE do, go figure.

Anyway, gluten-free pancake mix can also be used to make onion rings and as a batter for fried chicken! YUP!

ONION RINGS?! I could have ONION RINGS?! You just made my day. I'm going to try that as soon as possible!

You guys are making me SO HUNGRY!

I may be gluten-free but I'm so glad I don't have to give up guacamole, filet mignon, or champagne! Hmm, preferably all in the same meal.

Hi everyone! I went away for a while, because doctor after doctor all said NO, you do NOT have celiac disease, you do NOT have a gluten intolerance, stop asking because we are not going to answer that question again. (I'm paraphrasing... the actual quote was "we're done pursuing that.")

I went gluten-free for three months (AGAINST a "celiac expert" doctor's advice, I might add). For the first two months, no real change, nothing I could point to and say AHA. Third month: a world of difference! I actually felt better! Symptoms that had gone on for YEARS were finally going away. Amazing!

But the scientist in me had to do a control. I went back on gluten. First two weeks, still healthy. Hmm, must not have been the gluten... but wait. BANG, sick again. Beh, enough was enough! I went back to the gluten-free diet.

I had asked my doctor for a bone density scan, just in case. She said no, I don't need one. So when the bone scan guy came to our local tree-hugger grocery store, I went and paid out of pocket to have him scan my finger. My bones are normal... for an 80-year-old! Osteopenia, he says. Go give this paper to your doctor and tell her to give you a proper scan.

I went back with paper in hand. She agreed to test me, to shut me up. Didn't want to even look at the scan I brought with me. Said those things aren't accurate at all. Okay, good, then my scan should be normal. Right?

Got the call just now, osteopenia in hip and spine! She's baffled. What could it be? It must be my Crohn's, which was diagnosed by one lab tech in `93 and nobody has ever found any evidence other than that paper of its existence. Doctors all say the diagnosis is absurd until they see that shining golden document, then I couldn't possibly have celiac or gluten intolerance, because there it is in black and white: Crohn's. No reason to question the hospital who not long after that diagnosis lost its accreditation. It has been written, therefore it is truth.

Whatever. I'm done. I've had three lab tests now, and all came back positive for gluten intolerance. I've had more than three doctors and they all say nope, not gluten intolerance, no way, the test isn't "positive enough"! But at least my current doc humors me and says condescendingly that "if gluten-free is working for you, keep doing it." That's more than the others said. They asked me to stop the experiment. Even the expert guy.

Point is, my "Crohn's" is going to be "in remission" forever, once I stay gluten-free. I just know it. I'm going to repair my bone loss, if that's even possible, and get rid of the symptoms that have plagued me, and be healthier than I've ever been. And everyone except me will be mystified as to how it could miraculously happen all by itself with no medical intervention.

Yeah, I don't need no Krispy Kremes, not now, not ever. I'm finished with gluten forever, and I just wanted to tell my silly little story so that if anyone else feels the same way, they will know that sometimes doctors don't know best. Maybe THEY're on drugs. There's no other SCIENTIFIC explanation for their behavior!

-moonunit

P.S. -- gluten-free pancake mix isn't half-bad...

There's a decent article about celiac disease in the latest issue of Good Houskeeping magazine (August). I had read the content on a web site before I think, must be a reprint, but it's good and mentions the many different symptoms etc.

I am hoping to write a letter to the editor thanking them for the article and/or mentioning that you don't need to be skinny to have it, yada yada the usual stuff, just something to get some publicity into a second issue.

Glad to see this in a mainstream magazine!

(But it sure is funny/ironic that the cover has Rachael Ray and a photo of a bowl of pasta on it...)

I'm glad you got your answers and that they were what you wanted!

I posted on the post-testing board but not here... I did send away for the test and got my response the other day. It says I have a gluten intolerance but no malabsorbtion (I've been gluten-free for two months).

Up till now I've been skeptical that gluten intolerance was part of my work-up, but in the last week or so I all of a sudden started to feel better at last, so I'm going to try to figure out what's different and keep doing whatever I have to do to stay this way!

Just wondering...how do you know that the Enterolab results showed no sign of Crohn's?

I got the Crohn's test from them at the same time. You're right, the celiac test would not indicate this... but since several doctors insisted that I had Crohn's despite all tests up to that point being negative, I figured the extra $50 for that test would be worth it in the grand scheme of things.

I still might have Crohn's (too? instead?) but perhaps it is in remission? Who knows. The whole thing is just a big guessing game anyway!

Thanks to everyone for the replies and good wishes! I'm really enjoying this feeling of renewed health, even if it does not keep going!

Just posting in case this information helps someone... got my Enterolab results back and they say positive for gluten intolerance (and lactose intolerance) with no sign of Crohn's. Now I have nine opinions, and we're 3, 3, and 3.

BUT, something else has changed! As I started Week 9 of being gluten-free, something amazing happened. The D stopped! I have been walking, not running, to the restroom since last Saturday, and I've been doing so only 1-3 times per day instead of 5-7 times. All this time I've had ups and downs but never this many days in a row this healthy! It's so weird not to be chained to the restroom I feel like I'm walking out the door without my purse or something. Amazing.

But here's the kicker. I changed a couple other things at the same time as I got better. I stopped going to restaurants, thinking my cc risks were too high, AND I stopped drinking carbonated beverages. So maybe the gluten-free diet finally kicked in, or maybe with my resection I simply can't tolerate carbonation and have been unknowingly causing this all myself. Maybe I have an allergy to artificial sweeteners.

Then right in the middle of this experiment, the Enterolab results come back positive for gluten intolerance. Officially, we have three doctors who say Crohn's but not celiac, three doctors who say neither Crohn's nor celiac, and three test results (but zero humans) who say celiac/gluten intolerance but not Crohn's.

When I wasn't feeling any better on the diet, I was a huge skeptic. Now I'm a lay-scientist with a renewed interest in what might be fixing the problem. Whoa, maybe it CAN be fixed after all. One thing I do know: it's not a prescription drug curing me like all the docs said I'd need. I am not on ANY prescription meds. So something in my diet can fix the problems, at least temporarily. Is it going gluten-free? Is it carbonation? Artificial sweeteners in diet sodas? Was it my lipstick, the restaurant food, just coincidence?

Who knows. But if I can stay well, I'll do what it takes to keep this going. Whether the good times keep going remains to be seen. I just wanted to tell people who are on the diet for 6, 7 weeks that maybe keep trying, maybe in the end healthy will happen. I certainly never expected to wake up one morning and boom, have this many good days in a row, more than I've had in years.

P.S. -- Living off the amazing awesome goodies handed out at the celiac walk probably doesn't hurt, regardless of my gluten status! That stuff is fantastic and the walk was just wonderful! Attend one if you can!

Thanks, everybody. I agree, you wouldn't go buying the test without a suspicion, and you wouldn't post here very often if it all came back negative, so I fully expected the majority of people here to test positive with Enterolab. I was just having a "suspicious moment."

I got the test in the mail today and plan to send it back tomorrow. Either way, I figure I win: either I know what's been causing pretty much everything that ails me and can fix it myself at last, or heck, at least I can drown my sorrows with a good Guinness and some pizza and I'm no worse off than when I started this journey.

I appreciate all the responses, though -- it's good to know that they're not just some group of teenagers with a storefront, xeroxing one page of test results to send back to everyone who pays them! (Now I'm having an "exaggeration moment"...)

I'm doing the walk in San Diego on the 20th regardless of my results. You have an advocate in me either way! This disease WILL be a common household word by the time we're done!

Hey all, after my many doctor trials and tribulations, I've decided to do the celiac panel and genetic testing kit from Enterolab. The gluten-free diet isn't entirely working for me at six weeks into it (I'd call it inconclusive at this point), so I'm not sure the doctors are wrong that I don't have celiac disase. But I figured this extra test is worth a try... small relative expense if my entire quality of life is changed.

What I'm wondering is this: since Enterolab is an independent lab whose business model seems to be getting word-of-mouth recommendations from celiac patients to other potential celiacs, it would be in their best interest to never find anyone negative for celiac. I know it's a longshot to ask here because someone who tested negative would probably not hang around this board for very long, but does anyone here know of an Enterolab result for celiac and/or gluten intolerance that came out negative? For anyone? I just want to make sure they're not making a living on telling people what they think they'd want to hear...

(Not that this entire experience is making me a horrible grumpy suspicious cynic or anything...)

That's a tough thing for me right now... so many times we have been told not to necessarily trust that the doctor knows best, but at what point do you stop asking and just accept the answer? I'm doing the Enterolab testing, mostly for the genetics to find out whether it's necessary to test my kids, but since the other tests are available at a discount I might as well do them at the same time. I am doing the Crohn's one from them as well.

So at what point do you trust the answer you're getting? I'm sure I could keep going until SOMEone SOMEwhere said I had this, or I could stop at any one of the people who said no. Without being truly sure in either direction, it's just pure chance whether I stop on the right answer or the wrong one, it seems.

Incidentally, I find it interesting that no doctor at any time has suggested the possibility that I might have Crohn's AND celiac disease. They have said "you don't have celiac because you have Crohn's." Are the two mutually exclusive? Maybe so... I'd think it would have come up by now.

Thank you all so much for your support! I am going to just see what happens and try not to think too much about it for the time being. I can keep the diet going for a while on auto-pilot (I'm getting to where it's not so hard to do) and maybe I will improve and maybe I won't. There's only so much energy I can put into trying to get better... if this is how my life is, this is how it is. I lived with these problems for a lot of years before building up hope that there was a magic bullet that would fix it all, and I can live with them again.

Okay, after my primary care handed me positive (but incomplete) blood work and said it was borderline, and my gastro did an endoscopy and biopsied only two pieces, which were negative, both doctors said I do not have celiac disease and to stop looking in that direction.

So I made an appointment with a doctor who specializes in celiac disease for a second opinion, just to be sure. Told him about my 35 days gluten-free and how I had lost weight (a good thing in my case) and my family said I looked much healthier, etc., and told him about my aunt who was diagnosed celiac and my list of symptoms a mile long that are ALL on the celiac list...

...and he said no, I don't have celiac disease, I have Crohn's disease. My bowel resection in 1993 caused the D and that's how I will remain because I'm missing pieces of intestine that are required to make things normal. He wrote me a prescription for some medication that should help with it.

To be honest, I'm shocked. A diagnosis of celiac would explain pretty much every health problem I've had in the last 15 years, and though I guess my results of doing the gluten-free diet would be "inconclusive" right now (I'm not 100% better but I do have really good days and really bad days that I don't know whether are caused by food or what)... I said I would trust the expert, and he's an expert and he says I don't have it.

He also told me to go off the gluten-free diet now, and that whole grains are recommended as part of a healthy diet. I figured he'd want me to go ahead and finish the three-month experiment to see what happened, or at least say there was no harm in trying it to see. But he said to stop.

I have cupboards full of gluten-free food and have been coming to terms with this being my new life for over a month now. I do feel better, most of the time, so I think I will keep experimenting at least until the gluten-free food runs out (my husband's suggestion) or maybe till the three months are up (a friend's suggestion). But I feel really dumb for being so sure that this was the answer, and this guy just told me it wasn't. He didn't look at the imaging from my endoscopy (I called to confirm it had been sent to them and they said it was but it was not) and he didn't see the biopsy paperwork, which was also missing from the packet, but he sees celiac patients all the time and knows his stuff, apparently.

I will remain an advocate for publicity of course, because this is still very important to me even though I am not a part of your population after all. It makes me sad, not because I wanted this disease, but because this means that all those symptoms that I thought would go away are now part of me again and not going to be fixed. And with Crohn's, many of my risks that I thought would go away with a gluten-free diet will remain a reality for me no matter what I do. I thought I had an answer at last, but all I have is a gigantic laundry list of health problems that must each be solved individually. The drug companies will be sitting pretty when I am done.

Anyway, I wanted to let you know that I suppose sometimes it can look and feel just like celiac, and you can have risk factors and relatives with it and parental genes and symptoms all over the place, but that doesn't necessarily mean you do have it. Dr. Arrogant-pants (my old gastro) is still a jerk, but it looks like he was right all along. Go figure.

I don't want to do a second biopsy so I won't go back to gluten and I am hoping that the Doc will diagnose me on a "gluten challenge" alone. Do Doctors still do this?

Hi there! I don't have the other answers for you (but the people on the board here are very knowledgeable and can help you!) The "gluten challenge" is where you DO eat lots of gluten for a set period of time after having gone gluten-free and then get a biopsy or blood test. I think what you are asking is will docs diagnose on a positive response to a gluten-free diet alone. And the answer to that appears to be that some of the more up-to-speed doctors will... the less they know about celiac disease, the less likely they will allow it, it seems.

I only mention this because if you go into the doc asking for a "gluten challenge" diagnosis and he/she tells you to go home and eat three slices of bread immediately, they aren't being obnoxious, they're trying to do what you're asking of them.

Good luck, and I'm so glad you found a way to work safely and happily! I was a little worried about you!

I'm in the San Diego area... don't forget the big conference in L.A. on May 20th and the fundraising walk/art auction in San Diego the same day! I think they're listed on the calendar section of this site if you want details.

Argh, I'm so outraged for you that I had to literally walk away from my computer before I could come back and add my support! He is wrong, you are PROBABLY right (see, I'm even allowing for the scientific uncertainty about the stool testing procedure, since it's not widely accepted at this time). This is no FAD. That's like saying... okay, every time I come up with an example I think how awful I'd feel if I were one of the population in the example so I won't give an example.

As far as being overweight and having celiac disease, NIH disagrees with your supposed expert doctor:

"Gastrointestinal manifestations may include diarrhea, weight loss, failure to grow, vomiting, abdominal pain, bloating and distension, anorexia, and constipation. The presence of obesity does not exclude the diagnosis. It is very common for celiac disease to present with extraintestinal manifestations, sometimes with little or no gastrointestinal symptoms." Section 3, paragraph 2, consensus statement (Open Original Shared Link).

Your doctor said, "In 25 years I have yet to see a celiac patient who has weight gain problems." I think what he meant to say was "In 25 years I have yet to CORRECTLY DIAGNOSE a celiac patient who has weight gain problems."

Sigh. I'm still too mad to write coherently. I'm sorry and I feel bad for you. I hope you report the jerk to the medical board, because anyone who says that a person WANTS this disease because it's popular is clearly biased to the extent that his ability to diagnose correctly is compromised.

LOL he's probably just jealous that you have it and he doesn't. (KIDDING!)

Thank you so much for that info! Only having seen it written before, I had guessed too and that's how I was pronouncing it (see-lee-yack). Glad to know I was right. Nobody had ever corrected me or anything, but everyone I said it to had either never heard it before either or was a doctor (and based on what else they knew about the disease, I doubted they'd know how to pronounce it...)

Hello! One thing I'd recommend is to get a look at the biopsy they sent to the lab. The use of the word "sprue" (which is by some considered a little outdated) might mean that the doctor you saw is not current with information about celiac disease and did not take enough biopsy samples to test accurately.

This happened with my doctor -- the minimum number of samples even by NIH standards is 4-6, with other experts recommending at least 15 (the disease can be very patchy and may not necessarily be doing damage in the location they biopsied). Mine took two samples, probably from the exact same area, and told me that they were "normal" so that's the end of that, no disease. Someone (sorry I don't remember who, or whether it was in a book or on here) used the analogy of trying to biopsy a mole for skin cancer by closing your eyes and picking any random sample of skin, and saying nope, no skin cancer! Not necessarily. Maybe, but not necessarily.

The information you will find on this site is very valuable and for whatever reason, most doctors are not even close to aware it exists! Please try to find out more before you accept the diagnosis at face value. The good news is that a gluten-free diet will probably help you regardless...

I'm SOOOOOO happy for you!

Not that it's any consolation, but my dad just tried to get an appointment with the Florida "expert" Dr. Borislow and the person answering the phone said he does NOT specialize in celiac disease and has no idea how he got into the book in the first place. She grudgingly took the appointment but didn't really want to. Now I'm wondering how much to trust the results from the visit!

I suppose that's one way to educate doctors, send hundreds of patients their way with no warning... I think I will drop a line to the Gluten-Free Bible people and let them know that one of their endorsed doctors has no interest in celiac disease whatsoever.

Hmmm.

(Why on EARTH do so many doctors seem to have that agenda, anyway? It's like they're victorious and so thrilled to say you don't have it! Seriously, really, anyone in the industry know if they're getting kickbacks from drug companies for refusing to diagnose this disease? I can't see any other reason for them to look like they just won the big game when they give you the IBS brush-off!)

Gosh, I'm so sorry to hear that! I wonder if you could try writing to one of the doctors who IS recommended but is too far away and ask THEM whether they know anyone to refer to... how frustrating for you all!

Argh! I so feel for you!

Maybe your mother could ask him if NIH's stance matters to him. Here is a link to their consensus statement, which they built to make sure everyone was in agreement on the basics of celiac disease:

Open Original Shared Link

I plan to print this out and give a copy to my soon-to-be ex-doctor, who made similarly uneducated statements and said that Colubmia University's recommendation of the full blood panel for testing was "not necessary" and her medical group's labs didn't even conduct the full panel as policy.

Next time I come across one of these no-celiac-no-matter-what guys, I'll probably say, okay, the sources for my "opinion" are NIH, and the celiac disease research centers at Columbia University, the University of Maryland, and the University of California. What are your sources for people who share your "opinion," and if you feel that all the foremost experts in the United States are collectively wrong, perhaps you had better share your findings with them immediately!

Grrrr.

P.S. -- not sure where in Florida you are, but The Gluten-Free Bible lists Dr. David Borislow in Clearwater as a "celiac-savvy" recommended doctor.