lucky97

I am also dead sick of thinking about every damn thing I put in my mouth, not being able to go out with friends anymore or having to be "different" at a restaurant (if I can find one), not able to drink what I want and searching for stuff I can have. It SUCKS. Celiac disease SUCKS...there I said it!

Am I to understand that coffee I buy myself (like Maxwell House or Folgers) for my coffee maker can be cross-contaminated? Really?

I can tell you that Aldi's has more and more products labeled "gluten free" almost by the month.

I found Choceur's Dark Chocolate (made in Austria) labeled with the "naturally gluten free" symbol. Several of their chocolates were. It's the same gluten free symbol that's on the other products, although sometimes is says "naturally gluten free" or just "gluten free."

So I can assume these are all "safe," right? I've had almost no chocolate since going gluten free.

So my doctor says I'm still "slightly positive" for Celiac which surprised me since I went gluten free in November 2010, the week before friggin' Thanksgiving (my absolute favorite holiday of the year because of my mom's cooking). Sheesh!

I wonder if I was getting "glutened" by:

bacon at restaurants (I cut out ordering bacon, my arteries are happier anyway)

BW3 "gluten free" menu offerings (I cut out going there too...that kind of sucks but I would get the "D" every now and then right after which I thought was weird)

Red Bull (regular)

plain canned beans not labeled "gluten free"

Nestle's Toll House semi-sweet morsels

Blue Diamond Smokehouse Almonds

Giant Eagle Spanish Olives (with the pimento)

Aleve (not the gelcaps, just regular and I hardly ever used it)

Allegra-D (again, taken quite infrequently)

Those little coffee creamers at restaurants...I ask for a little milk now

Grade A honey

That's about it, I'm pretty versed now on what is safe and not safe, and now I don't eat ANYTHING not labeled gluten free.

I suspected it was eating out at BW3 which I did most often (but not now). I still go out to breakfast on the weekends but only to two places and order the same thing...scrambled eggs and fresh hash browns (not from a bag).

Any thoughts? The doc seemed a little surprised too. I had questions about my blood work I posted on another board on the forum; I find that stuff confusing.

I just want a follow-up visit where he says "Congrats, you're negative for the Celiac" because the longer I'm not the more I worry that "something else" is going on. But I do know my blood tests show I'm now just slightly positive (as opposed to before) from whatever blood readings they look at for that.

Thanks!

You will get the hang of it, I was overwhelmed at first...particularly after the diagnosis when I walked into a grocery store like I always did but first realized "Hey, I can't eat most of this stuff anymore." It was totally weird. But not now, I'm over it.

The best thing to do I think is to make a couple lists. You won't need them forever, but will for awhile. List the foods you know are labeled gluten free (there are more and more all the time now). Then make a list of things you checked on the web that are gluten free but NOT labeled if you want to go that route...for example Ortega taco seasoning, according to their website, is gluten free. Coke on their website states it's gluten free. Stuff like that, but really check. I search on these forums AND the company website before I'll use it now, almost like a cross reference because ingredients and the like can change.

It's getting easier and easier all the time I've noticed to find gluten free things, and I've only been Celiac less than 18 months myself. Beer was the hardest thing to say goodbye to but there was no getting around that. If you drink, you'll figure out the safe things to have. It's a list, like the others.

Good luck in your gluten free adventures!

Hi,

I was diagnosed with Celiac at age 45 with no prior history in my family, but a significant, sudden liver problem that led them to the Celiac.

The endoscopy is pain-free (and outpatient). It is a standard procedure. For the record I also had a liver biopsy (that came first to rule out liver tissue problems--it did) and that was equally pain-free...all relative to what these procedures are for of course.

Strict adherence to a gluten-free diet will usually be all that's needed for intestinal healing but it can take awhile (I'm going on a year-and-a-half and not yet fully healed but all the readings keep improving). Cutting the main gluten sources out is pretty easy...the "hidden" gluten and cross-contamination are real issues but, like everything else, one gets the hang of a clean, gluten free diet and adjusts.

Steroids and the like are not the first line of defense; in my case the specialist was happy to NOT put me on steroids because it looked like I had a liver auto-immune disorder but he wasn't convinced...which led him to keep looking and then he found the Celiac, the base of my medical problem.

Good luck in all your gluten free adventures!

It is normal for Celiac disease to raise liver enzymes. Many Celiacs, myself included, had raised levels pre-diagnosis. Mine returned to normal after following the gluten-free diet. I was not drinking then at all because I could not tolerate alcohol before I went gluten free. Now, it's a whole different ballgame! Love my red wine!

Autoimmune liver disease is so closely associated with Celiac that anyone who is diagnosed with a liver problem that may be autoimmune, should be tested for Celiac. The thyroid is the next organ which is highly affected by Celiac. I have a cousin who has had a liver transplant because of autoimmune liver disease. His doctors know nothing of the Celiac connection and he isn't listening to anything I throw his way. Which is a shame because his health is so poor, he had to retire from a high end career because of it. He is in his 60's and I doubt he will live to see 70. Why are people so stupid? He has not done well after the transplant either so I really think he is a full blown Celiac. He does have GI problems also.

I did post this on another board but my Celiac was diagnosed only after a serious liver illness that didn't point to any of the other scary, nasty things that make one turn banana yellow. The specialist kept telling me how "lucky" we were to correctly diagnose the celiac as opposed to putting me on steroids because it sure looked like a liver autoimmune disorder.

My AST and ALT were QUITE high...then, once I went gluten free, those readings went down by half with each blood workup until eventually they returned to normal. However, it took about 4 months or so for that to happen.

Hello and thanks for the reply.

My liver problem 16 months ago was significant and what started everything... over about a month's time I had been COMPLETELY exhausted, lost 25 pounds and went jaundice. Spent five days in the hospital while they took all sorts of pictures but found no tumors in the places they looked. I was on complete bed rest for five weeks. It looked like a hepatitis but I was negative for all of those. The specialist has repeatedly told me how unique and difficult my case was to properly diagnose because it looked like a liver autoimmune disorder but, once he suggested I "try" a gluten free diet, the scary bad readings all started to recover...then the liver and intestinal biopsies and all to confirm celiac. He said he was very close to diagnosing something very different which would have put me on steroids maybe for life...and in the end would not have addressed the gluten intolerance anyway.

What I'm left with now is the subject of this thread, some blood readings that are "slightly abnormal" after about 16 months. But I truly feel fine, I'm no longer anemic and, although I'm thinner than I used to be (since there's no more beer weight) the only indication there is something wrong is this doctor telling me there is. But not alarming enough for him to follow up less than every four months.

Since January (the follow-up visit I've been referring to) I have eliminated I think the last possible sources of hidden gluten or cross-contamination in my diet...AND all alcohol to try and put the blood work back into "spot on" territory for my next follow-up in May.

I'm single and ate out a lot at a BW3 across the street...I ate only their couple gluten free offerings but I think I was getting cross-contaminated and stopped eating there. I cut out ordering bacon also when eating out for breakfast, I thought that might also be a source of hidden gluten. We'll see in May if I was right. Otherwise I'm strict and eat the things I've found on this board or whatever is labeled gluten free.

I just want to get that "two thumbs up" follow-up appointment I haven't had yet. Then I guess the last step is the doctor is going to do one more biopsy to make sure the villi have recovered, did I understand that right? I think he said we're not ready for that yet.

I'm the first person in my family with Celiac; nobody knew anything about it before me. They know plenty now.

Lucky, No, not things like silverware or stainless pots & pans or plates & glasses & bowls but scratched teflon, wooden spoons & such where gluten may lurk.

I guess I would have to ask one question on that point then: How long does one think molecules of gluten can survive on a plastic cutting board that gets washed every time? Well-kept but not perfect non-stick Teflon that gets washed?

Seasoned cast-iron cookware...although I guess nothing with gluten goes in my cast-iron skillets anyway, or hasn't for about a year or more.

Maybe I'm thinking about it too hard.

Quite frankly I am quite surprised that pre-celiac disease cookware has to be eliminated...I didn't think gluten would survive the regular, daily cleaning process of dishes, cookware, silverware, etc...am I wrong about that? I don't see how it could.

As far as gluten in the diet, your best new friend is the internet and google searches. Personally, now I don't eat ANYTHING that doesn't have one of the gluten free symbols on it (and there are several), except for the raw foods of course.

But I search it all on the web. Even in the past year or so when I had to go gluten free, more and more stuff is being labeled or becoming available for celiacs.

Good luck in your gluten free quest!

So my gastroenterologist tells me my blood levels are "slightly abnormal" and he says having an Transglutaminase IgA reading of 21 is also "slightly abnormal." So I assume this means I'm still getting a little gluten SOMEWHERE after starting my gluten free diet in November 2010. He also said the blood readings and the celiac are "two separate issues." Dumb me, I didn't press him so I'm confused.

Then my primary care doctor looked at the same 11 blood tests a couple days after (for my regular physical) and said he (my regular doctor) would consider the blood work "normal" and to give things "a little more time," I assume to readings to drop back into the normal range.

I do remember seeing an IgA reading on one of the blood tests last May and it was 46...and now it's at 21. Does this IgA reading reflect the healing of the intestines over time (like the condition is disappearing) OR is it an instant indication that I'm still ingesting gluten somewhere.

Plus I don't understand why the specialist would tell me my blood reading and the celiac condition are "separate issues." I had been drinking hard cider as my only alcoholic beverage of choice up to that appointment, after which the specialist asked me to refrain from all alcohol for about 4 months (till my next scheduled blood tests/follow-up appt).

The only things I see that are out of the regular range in the blood tests are (and there were a lot of tests): RDW-CV 19.1 (15.0 is the high normal), Platelet Count 149 (150 is low normal) and Mono% 14.7 (12.0 is high normal). The specialist has told me my liver levels are "spot on." I had a serious liver problem develop out of the blue, which is what started me on my road to needing this forum in the first place.

I feel fine, my weight is stable but I'm about 20 pounds lighter than I was pre-celiac. I suspect most of that was beer weight!

I know that's a lot of information but it's been on my mind an awful lot. If I'm still getting gluten I can't imagine where; I read a lot about it and am strict about the diet. If there's something else he might be monitoring regarding my blood work, I want to understand that, too.

Are you drinking hard ciders that are specifically labeled gluten free? Maybe that could be the problem.

I love drinking hard cider, as I miss beer very much...along with crunchy food (which I am finding more of though).

Aly1 - If you were drinking vodka. I know I never never get D, even pre-gluten free. I had my first vodka since being gluten free within 2 hours I spent the rest of the day in the bathroom with D. I know everything affects everyone different, but I used to drink vodka a lot, I was kind of shocked by that reaction. I definitly think some brands no matter how they are distilled must still have gluten. I emailed the company too, they claim all their flavors are gluten free because of the distilling process.

No, I only drank gluten free hard ciders...Strongbow, Woodchuck (yuk), Magners if it was available and it rarely was. None of the "amber ciders."

Hi

I have been gluten free for a month and no longer crave alcohol. They say you crave what you are allergic to. To me it was beer and toast! I had one drink last night I got a allergic respons and felt sleepy maybe my tolerance has lessened. I could never tolerate it anyway three beers and I was a clown! Good luck.

BarryC, uh, maybe you already know this but there's no more beer if you have Celiac (you said you had one drink and had an allergic response--don't know if it was beer). There are other gluten-free drinks but not beer (unless it's a gluten free beer, not impossible but not easy to find). If your one drink was beer you are priming yourself for serious health consequences at some point as your intestines are damaged by the gluten (in beer).

Again, sorry if you already know all of this.

Trust me, I was a beer man myself from the word go...until Celiac came to town!

Well thanks for all the quick replies...

As far as my blood work (which is extensive every four months) I do remember my WBC was 3.74 (low normal--but that's up from before), my platelets were at 149 (150 is low normal) and, the only other thing I remember seeing was the mono% was I think at 14 (13 is high normal). That and the IgA at 21 (under 20 would indicate my diet is gluten free) are the only things I noticed.

I stopped google-ing those things in isolation, which only led to some scary diseases and I don't know what I'm looking at anyway.

However, I feel fine. In fact I'm no longer anemic for the first time in 16 months, and he said all my vitamin levels are good, thyroid, all of that. Plus I have more energy now than I've had in over a year.

Sooooo maybe it's the molybdenum-rich foods thing I need to look into and of course I don't have a problem with no alcohol for several months but I do miss the occasional drink with friends, that's all.

Hi,

I was diagnosed a little over a year ago, and have been gluten free (to the best of my knowledge) since November 2010.

I still test slightly positive for Celiac (transglutaminase IgA is 21, where a weak positive is 20-30). I'm going to see a nutritionist this week to comb through my diet but I only eat things that are labeled gluten free. That part is getting really OLD because now I don't know where I'm getting gluten.

The gastroenterology specialist also says my blood work is "slightly abnormal" and has cut out alcohol from my diet for the next 4-6 months. I only drink hard ciders, and only a few a week. My primary care doctor (who is NOT the gastroenterology specialist who diagnosed and is treating the Celiac) said actually he would consider the blood work normal but also advises removing alcohol as a variable until, I guess, my blood work is spot-on.

Why would my body now "tolerate" alcohol less or maybe even not at all now with the Celiac? I don't get it, and yes sometimes Celiac is taking all the fun out of things.

Are they steering me away from alcohol (and not the types of drinks, I know what Celiacs can and cannot have as far as gluten-containing) because of this higher risk factors for the lymphomas and whatnot? I should stress that the specialist hasn't mentioned anything like that at all, and is just going to repeat the blood work in four months for the next follow-up.

I am getting frustrated with the whole thing I guess. After getting Celiac, what lightning bolt hits the body so as to react poorly to alcohol itself?

Thanks.

Check out my current avatar!

I have never encountered an olive, pimento-stuffed or not, that contained gluten. It's just not something I worry about.

Enjoy!

This is great news, as I have a new craving for them and just had a couple...then thought twice and looked them up on this site.

Kind of reverse of what I do!

Whew!

Hi,

I have wondered this for a long time now.

My celiac numbers are going down, but slower than I would hope...as I've asked about in other topics, but I do like my Strongbow cider from the bar. From the tap, the only way they serve it there.

Is there a chance I'm getting cross-contaminated by the bar glasses? Sure they wash them but beer and everything else could've been in them...and from time to time I do get the "D" after being there although I stick to gluten free items they offer.

Anybody else had experiences like that? Hmmm...

A crushing depression is not what I know as something that is associated with the Celiac or being "glutened" in particular instances. I have always had issues with Dysthymia but, even after the Celiac diagnosis, they did not change because of the radical change in diet. I wish it were so.

If feeling very differently low you should treat it like a true illness (from which relief can be had) and contact a doctor immediately to pursue relief.

Hope this helps you.

Well, now feeling downright miserable and, seeing Theraflu on this list, I'm going to take some. Always worked pretty good in the past before I was diagnosed. Wish me luck. Oh, here's the list...

Open Original Shared Link

After almost one year of being a Celiac, I've found absolutely nothing even remotely close to bread as I knew it. Almost resorting to learning how to bake my own and FORGET that Bob's Red Mill stuff.

Hi,

Is Theraflu Flu and Sore Throat gluten free? I see it contains maltodextrin which, in medications, is supposed to be suspect.

IF it is NOT gluten free, can I take regular aspirin or widely-known pain reliever? I haven't been sick since getting this diagnosis last year and really need some relief but haven't taken anything yet.

As an aside, I find searching this site "via google" a little confusing.

Thanks!

Is this question a joke???

I'm unamused as gluten-free bread is garbage.

Sorry to ask again...what readings of the blood workup comprise the celiac panel?

Thank you much!

What readings in my blood tests should I be looking at to follow this celiac panel? Gawd knows the cost of this blood work...thanks!

Still cutting out the BW3 wings anyway until my next blood work-up in December.

Thanks!

What readings in my blood tests should I be looking at to follow this celiac panel? Gawd knows the cost of this blood work...thanks!

Still cutting out the BW3 wings anyway until my next blood work-up in December.

Thanks!

Hi there,

I hope that is the way to word this topic.

I've been eating gluten free since about last December at the adivce of the specialist. I had all the testing and got my official diagnosis of Celiac in Feb. 2011.

It's now September 2011 and he says I'm still "positive" for Celiac, which to me means there must still be some gluten in my system? He says my readings are "going down" each visit but I thought by now I shouldn't be "positive" for it anymore. He also mentioned something about the "titers" but didn't really understand him.

He didn't seem overly concerned but I am...when I hear talk about white blood cells and all I get nervous. My WBC count is average but very low average.

I do follow a strict gluten-free diet and went through the weight loss phase and have now gained back 5-10 pounds (I lost 20 when I got sick but some was beer weight for sure!).

I went to drinking safe hard ciders, mainly Stongbow, even having up to four a night.

Can the alcohol in the hard cider be hampering my recovery? My thyroid reading is a hair under average which is also new.

I've made some gluten "mistakes" but they were incidental...oh I know fairly quickly if I made a mistake and you know what I mean.

Soooo...is it normal to still be testing "positive" on your celiac panel (but a progressing downward trend) after 10 months? I guess I'm getting worried about perhaps the more serious underlying condition that celiacs are in a higher catagory to develop. However, I guess the doctor would want to see me again in less than four months if he was seeing something more concerning. I dunno.

I loved going to BW3 for only wings and Strongbow but, wondering if I'm getting cross-contaminated there (even though the wings...plain are gluten free...are prepared in a dedicated fryer and I get the gluten free sauces on the side) I stopped going about two weeks ago. Rats.

I cannot think of any other source I would still be getting gluten...I'm a label-reader and looker-upper on the web for everything I eat, and I don't do the processed foods unless they say gluten free.

Thanks.