jabberwife

Thanks! My sister, once she eliminated gluten and corn from her diet, was able to add dairy products back in. Here's to hoping!

Regarding the gene thing - yes, I've heard mixed answers on that. I would be most curious as to what genes my father has, as he's the one that has been clinically diagnosed as celiac. My brother and sister were self-diagnosed.

I am more sad about the dairy-free thing than going gluten-free. Which I'm sure would be funny to some. I just love cheese, even if I don't eat a great deal of it. And soy cheese is too processed and just gross, to me at least. <sigh> I'll have to suck it up, huh? It's not the worst thing in the world!

The doctor's visit:

Dr. Secor is a really great guy. I know I've only been for 1 visit, but he sat down, listened and took notes of all of my issues, looked through the copies of blood work and my Enterolab results (which were negative) I brought, and then explained all that he knew of celiac disease, gluten intolerance, etc. He does understand that a lot of the symptoms of celiac where what I was presenting with...however, my gene testing shows that since I don't have DQ2 or DQ8, I don't have celiac. Could have gluten intolerance though...as for gluten intolerance, he suggested I continue with my trial diet, as I have been doing, and test it in a few weeks...and if I feel better without gluten, then so be it.

He spent more than 30 minutes with me, discussing all of my other issues and symptoms. He made out a "game plan", so to speak, of what we can try, and if that doesn't work, what the next step(s) are, and wrote things down as we were talking, so I could bring the notes with me. Most importantly, he assured me that how I'm feeling is very real (I keep feeling like other doctors dismiss my symptoms, it's made me feel like I'm a complainer or a hypochondiac!), and that we'll work to find solutions. He made himself very available for questions, emails, phone calls, etc. I was very pleased with his knowledge of celiac and gluten intolerance (he spends time with the DFW celiac support groups), and happy with his manner in which he took the time to listen and discuss things with me. He even checked to make sure I understood everything at the conclusion of the visit, and introduced me to the nurse as well so that I could be familiar with her, and ask her questions as well.

So, my plan - to continue with the gluten-free diet for a while longer, and challenge it, and document my symptoms. Also, he suggested doing the same for lactose/dairy. (Which I've thought about, just didn't want to admit to myself! ). Also going to try some enzymes and such to help with constipation issues.

So, to those of you looking for a doctor in the Dallas area, I think he's a great guy who will not blow you off when you're concerned about how you're feeling, etc. And if it turns out that I am having a reaction to gluten, as I will determine by diet, then I'm okay with just self-diagnosing "gluten intolerance" and going from there.

Thanks to everyone for your help!

I'll let you know how the doc visit goes. I did create a list of the symptoms I was having, plus notes on what is still occurring, what is better since the gluten-free diet, etc.

I think it's definitely genetic - my dad, sister, and brother all have it!

I don't have the actual blood tests. (Should've asked for my PCP to send a copy - duh) I do have the email from the doctor after my last visit though. I'll call them to see if they can email me the actual test results, although it's kinda last minute.

Also bringing my old Enterolab results. Not sure how well those will be recieved, but bringing them might be of some use.

Wish me luck! Thanks for your help.

The doctor is Dr. John Secor, MD. He's at the Dallas Presbyterian Hospital. He is an active advisor for the Lone Star Group for DFW Celiac. I haven't seen him yet, so can't give a personal recommendation, but I figured with his interest in celiac, it was a good place to start. (My current PCP labeled celiac as a disease where you only have diarrhea... )

I had thyroid checked. Came back normal. After I saw the PCP, and he came back with my B12 levels being low normal, he suggested I take a sublingual supplement, 1000 mcg a day. I was taking a siblingual pill, 2500 mcg, every other day prior to the test (for about a month). I switched to a liquid sublingual supplement that was 1200 mcg a day (couldn't find 1000). That actually has helped the fatigue somewhat. And I'm no longer having these crazy dizzy spells where I feel like I'm going to pass out. Also, my feet used to swell. Not significantly, but enough so that my shoes would pinch and be really uncomfortable. No swelling issues anymore...I think my body retains less water since going gluten-free, my rings are looser and everything.

I'm wanting to be patient on the gluten-free diet. I talked with my sister, and it took her 4-5 months to feel better. And while I went gluten-free before (for almost a month), and didn't feel significantly different, I now am much more aware of what I eat, as I rarely eat anything processed. I'm a meat/whole veggies/whole grains (rice, quinoa, corn) kinda gal now!

Anyway, I hope that visiting this doctor can provide some answers. I don't mind going undiagnosed as far as celiac is concerned so much, but I do want to have some assurance that I'm on the track to healing. Also, if there's anything else that could contribute to my not feeling well, I want to find out what it is so I can fix it.

Thanks!

I have an appointment with a gastroenterologist (that is very involved in the Celiac support groups here in Dallas) on Wednesday. My reason behind going - I have had IBS-C for several years (actually, as long as I can remember...but diagnosed only for about 6 years.) I have tried it all, changing diet (I eat healthy), relieving stress, exercise, increasing fiber. Also laxatives, both prescription and OTC, only to have them stop working within days. In addition, I commonly have horrid gas. (sorry TMI) Have been blood tested for celiac back in 2004, came back negative. Also did Enterolab in 2006 (after about 3 weeks gluten-free), came back negative, but I have two genes for gluten intolerance.

HLA-DQB1 Molecular analysis, Allele 1 0603

HLA-DQB1 Molecular analysis, Allele 2 0602

Serologic equivalent: HLA-DQ 1,1 (Subtype 6,6)

Makes sense, my father, brother, and sister are all celiac or gluten intolerant (my brother and sister are not clinically diagnosed).

Anyway, so I dealt with my "IBS" diagnosis. But since about November, I've felt increasingly fatigued, my skin was drier, and I couldn't seem to get energy, no matter how much sleep I had. I was getting tingling in my hands more frequently. And the brain fog! Increasingly, it was as if someone pulled a blanket over my eyes. Starting in May, my heartburn got much, much worse, and so I made a point to list out all symptoms to my doc. I told him that I felt way too old for my age! (I'm only 29, and am at an appropriate weight and everything) Told him the only time I felt a bit more energetic was when I was taking B12 supplements. He didn't have much to say, but took a blood test to check hormone, iron, and B12 levels. B12 was low normal, even though I was already taking supplements and had a big fat steak the day before. He suggested I supplement and come back to be rechecked. Also told me to take Prilosec for heartburn.

Frustrated (and after the Prilosec didn't work), I made this appointment. Also, I went gluten-free as of June 24. Been logging every meal, and all symptoms, since July 1. I have felt somewhat better (my mind is clearer) but GI symptoms aren't gone. Still C. Gas is more or less gone though, I no longer have the horrible bloating pains nearly as often. And the fatigue is better, and the tingling hands only has happened once in the past month. The heartburn has improved, but it's still present.

So, I'm looking for advice when I go visit this doctor. What should I ask? I want to tell him about the gluten-free diet trial, but I wonder if I should do a gluten challenge, and when? I want to tell him what has improved, and what hasn't. Do I demand tests? If so, what tests do I ask for? I want to know what to make sure I mention and ask, so that I can get the most out of this appointment.

Thanks everyone!

I echo the same responses others have given...salads! Almost every day for work I bring a garden-like salad...greens, plus a variety of veggies (right now baby tomatoes, since it's summer!), snap peas, broccoli, whatever I have! Add a bit of leftover roast chicken, a hardboiled egg, or some cheese. Sometimes I even had a handful of sunflower seeds. Pack that and the dressing, plus some fruit and nuts or homemade trail mix to snack on, and it all fits and stays cold in my cheap-o insulated lunch bag, along with an ice pack, for many hours. I plan on expanding my variety to include cold quinoa salads and such soon!

Just wanted to share - I have a food blog and recently posted this cookie recipe. These cookies have no grains, no butter, yet they taste like pecan pie. They're deliciously chewy and easy to make...and I dare you to eat just one. Check them out here:

Pecan and Cashew Chewy Cookies, as adapted from SippitySup, who borrowed it from Harris Ranch

2 1/2 c brown sugar

3/4 t salt

3/4 t vanilla extract

1 lb pecan pieces, coarsely chopped

1/2 lb cashew pieces, coarsely chopped

1/2 c egg whites (about 3-4 large egg whites)

Heat the oven to 350 degrees. In the bowl of an electric mixer, combine the brown sugar, salt, vanilla, and nuts. Beat on low speed to incorporate ingredients. Drizzle in egg whites. Increase the speed to medium-low and beat for 4 to 5 minutes, scraping down the bowl as needed. The dough will be thick and sticky.

Drop your dough in rounded tablespoons onto a parchment-lined baking sheet. Press each ball of dough with your fingers to form a cookie about 3 1/2 inches in diameter, about 1/8 inch thick.

Bake 10-12 minutes, or until the edges are lightly browned. Remove from oven and immediately move cookies to a cooling rack. (These cookies are soft straight from the oven, so you will have to be careful to

Constipation was also a lifelong problem for me. I was 'regular' in that I had a daily bowel movement, but always had hard stools, unless I took copious laxatives, which also gave me excruciating cramps. I learned to take magnesium and Vitamin C daily to just have 'regular' daily movements, but never soft enough to prevent hemorrhoid pain. Eliminating gluten and dairy prevented occasional episodes of impacted stools, but I still had hard stools. After treatment for Klebsiella bacteria followed by high doses of probiotics I experienced a few weeks of 'normal' soft stools. However I later returned to my 'regular' hard stools ... UNTIL I began taking digestive enzymes with Betaine Hydrochloride.

Even after I eliminated gluten and my 4 other food allergies (dairy, eggs, soy and cane sugar), I felt uncomfortably full after most meals. So I decided to try 'stronger' enzymes with HCl. Then I read a book entitled "Why Stomach Acid is Good for You" by Jonathon Wright (a local doc). He said that low stomach acid prevents absorption of magnesium (which I already take for regularity) from foods. I had been misdiagnosed with 'gastritis' years ago and given acid blockers and antiacids, which depleted my stomach acid. I now realize I never had gastritis or 'gerd', but merely had compromised digestion from yet undiagnosed celiac damage. After I took digestive enzymes with HCl for about 2 months, my stools became 'normal' (soft) EVERY DAY without fail (unless I take a medication like Tylenol PM which dries up EVERYTHING).

If you have ever taken acid blockers or antacids and now have constipation no matter what you do, consider taking digestive enzymes with HCl. You may not be absorbing enough magnesium from your food. All the fiber in the world didn't help me and even caused occasional impacted stools. Magnesium, which helps the intestines absorb water into the intestines, also controls smooth muscle movement. However HCl helps you absorb magnesium and other important nutrients from the foods you eat. I LOVE having normal and regular bowel movements every day for the first time in my life!

BURDEE

Burdee, did you even try psyllium before this? I am considering some HCl, because I've been gluten free/dairy free (lite, I've had a little cheese once or twice) for about 60 days, and the constipation is ridiculous. I've tried magnesium and Vitamin C, I eat fiber like a crazy person, I even tried psyllium (the natural, gross, not Citrucel stuff) and it worked the first 2 times, but now it just makes me feel incredibly full and later--gassy--with no relief. I'll go, but when I do, they're little hard stools, and only a little bitty bit at a time. I don't have other symptoms of indigestion in my stomach, but would HCl be harmful in any way? I'm feeling a little desperate at this point. I also have acne troubles, I've read this can be related?

Hi.

If you do have candida problems then leftovers are a no-no.

In my experience vitamins can be a real challenge to digest, particularly anything in a gelatin cap.

Reading your story reminded me of my own, for years I mostly avoided wheat and when I did indulge I would suffer a little but I would bounce back fairly quickly. Then one day I didn't bounce back, I got worse, much worse than I ever dreamt I could get.

So, I had that same kind of experience of not eating it for a few months, eating it and not feeling so great but no immediate heinousity.

It took me time to accept that I was going to have to change, I wish I had been smarter.

What do you mean by leftovers being a no-no? Is it because they might grow more bacteria in a certain time? If I can't do leftovers, I'm not sure how I'll manage lunch! A salad every day with a can of tuna just seems like it'd get awful old!

Thank you everyone for your thoughts and suggestions. I've been trying to eliminate other things I think might be contributors to this problem. Last week I started to take acidophilus & bifidus, and some digestive enzymes. No real change. I also bought psyllium, thinking that since it was a nice, natural laxative and non-habit forming, it would help. Success--for the first two days. Then, I'm right back where I started. marfa, it's like you say with your son, it seems that no matter how much fiber I include in my diet, I'm still constipated. And more gassy than I was pre-gluten-free. I've started to think maybe I'm having a candida or bacterial overgrowth issue...I've been logging my meals for about a week now. Yesterday I started to eliminate all but my multivitamin and fish oil, thinking maybe all of the extra vitamins were contributing somehow. (I take a lot!) I seemed better until the evening, which was an improvement. But we'll see!

Thanks everyone!

So, does this also apply, would you think, to stool tests like Enterolab? They're testing for similar things, it's just supposed to be more sensitive, right?

Just to point out, It is possible to have IgA deficiency without knowing (i.e history of illness')

Really? That's interesting. Would you have to show up on the IgA tests as having 0 or 1, or is something like a 5 or 6 still mean you could have the deficiency?

I have heard that this deficiency seems to happen somewhat more often with celiacs.

I have been trying to be very careful about CC in the house...and I've checked personal care products.

I read on IGA deficiency, and it seems as though in order to have that, you have to be someone who's likely to get infections often. I'm actually pretty resilient, I rarely get colds or flu or any infections. I haven't been sick since Thanksgiving (knock on wood...I'll probably come down with something now!)

I did just visit my chiropractor (who also has nutrition background, and is familiar with gluten and other food intolerances) and talked to him about some of the foods I'm eating, and he suggested to try to do a few days pretty low-carb (no fruit in the morning, no grains, just veggies and lean meats) and see if the bloating, etc goes down. And he suggested acidophilus. So, I'll still be gluten-free and dairy-free, but I might try that. Could be that the bacteria in my system are ALL sorts of confused lately.

I just dislike the inconvenience of an all-out elimination diet at this point.

And AndreaB, work on getting more of those veggies in your diet! It's amazing, I never thought I could actually "fill up" on veggies, but I'll go home and make myself practically a whole bunch of spinach, and a little chicken or something, and I can actually feel almost "stuffed" from the spinach. But it's sooooo yummy. Sometimes, the best way to eat veggies is to do very little to them, just steam or lightly saute them, with just a little salt and pepper. And to make sure you get more than enough veggies, make extra for your lunch the next day! I have become the queen of leftovers lately.

Hello everyone...I would love if someone would take the time to read through this and help me out!

Let me give you the big, full picture, so that maybe I can find someone else with the same difficulties I'm having. Celiac/gluten intolerance runs in my family, first of all. My dad was diagnosed about 15 years ago (biopsy), and my brother and sister both have gluten intolerance, although it has not been medically diagnosed. They were having major digestive "issues" with eating gluten. My sister also has an intolerance to corn, she discovered this about a year ago after going gluten-free. My dad can eat some corn, but is becoming more intolerant of it.

I have been "diagnosed" with IBS for about 4 years now. (I say diagnosed because it really doesn't seem like a "disease" to me) My biggest complaint is the awful gas I get after eating God-only-knows what, I can't seem to narrow it down. I also have mostly C, with some D. And usually feel bloated after meals--sometimes, my belly gets so distended I look 4-5 months pregnant.

I've suspected gluten more than once, given the family history. I had a blood test about 4 years ago, came back negative. I had the Enterolab test done last summer. Here were the results:

Antigliadin IgA 6 (normal <10)

Antitissue Transglutaminase IGA 5 (normal <10)

Fecal Fat 73 (normal <300)

Anti-casein IGA 5 (normal <10)

Gene testing--(which means that my mother and father both carry a gluten intolerance gene, which explains the fact that the incidence of gluten intolerance runs in my family so highly)

HLA-DQB1 Allele 1 0603

HLA-DQB1 Allele 2 0602

HLA-DQ 1,1 (subtype 6,6)

Ok...but after receiving these results, and being on a gluten free diet for about 45 days, I challenged with a bagel. I got really bad brain fog, but that was it. So I thought...well...that's not it. And gave up.

Fast forward to today. For the past 4 months, I have begun to eat very healthy, practically dairy-free and gluten-free, not for intolerance reasons, just as part of a natural, organic diet. I don't eat processed foods, really, don't drink Diet Coke or any sodas, no candy, etc. I went off of birth control pills (I took them for 12 years) and off of ADHD meds (Concerta) which I took for about 2 1/2 years. Mentally and energy-wise, I feel much better. I've lost some weight--not that I was overweight before, but I'm leaner now) However, I give myself "food vacations" every once in a while, and have some cheese, something with wheat in it, etc. Not as much lately though--I had pizza Friday night before last, and even though it wasn't greasy, I had immediate brain fog...like I was high. In a bad way. It was a super-spacey, unreal feeling. And then, Saturday morning, there was the D. Like 4 times. And I was weak, I went to jog and could barely make a mile (I've been jogging 3 miles several times a week). Well, I kinda laid low that day, and then Sunday went and had sour cream chicken enchiladas--the dairy gave me a bit of a tummyache a few hours later, and then C for the next week. I mean, I would go more than once in a day, but it was very little and looked like little pellets or something (sorry so graphic here guys!).

Overall, I've still had C pretty constantly. And it's not from lack of fiber or water, I eat 2-3 pieces of fruit each morning, drink a gallon of water a day, and eat probably 5+ servings of veggies a day. I don't eat a lot of greasy fatty stuff, most of my fats come from olive oil and nuts. I don't eat a lot of grains, and I've been diligently watching the gluten since the pizza incident. I'm not eating dairy since the pizza and enchiladas. But I still have the C issues, and the gas issues, and the "pregnant" bloating issues. What's up with this? I can't figure out what causes it.

So, am I still healing--if it's gluten intolerance--and that's why everything causes me to be "gassy"? Or am I intolerant to a whole bunch of things? I don't know what's going on! I would love to just be NORMAL, for once. So if anyone has any insight, please share!

So all of these roux ideas you all are talking about, they brown with the oil like traditional flour? Cause my husband loves to make this Emeril recipe for "Turkey Gumbo Ya-ya" and I LOVE LOVE LOVE it, but now I can't have it. Would love to have some flour idea to subsitute and make the gumbo taste yummy, without altering the flavor.

OK, just wondering kinda what my odds are. I have a father, brother, and sister who are all celiac. I have been told I have IBS, but in Jan 2005 had a blood test that came back negative. IgA at like 1 unit or something. Went to a gastroenterologist who still said it was IBS and prescribed me Zelnorm. Quit taking that after a few months, certainly doesn't help. I have alternating C with D but C dominant, as well as some serious gas at times. (yuck!)

Well, I have had itching on my shins, mostly, for the past few years, and there's no rash, but it's crazy itchy at times. I asked my doctor about it, and after running through possibilities, he thought I should look at food allergies. Well, I figured there was no correlation between my consumption of anything, except gluten and lactose, which I ate all the time. So...I decided to go gluten free (because of family history.) After about 3 weeks of gluten-free diet, I decided to also submit stool samples and gene tests to Enterolab. All stool samples came back negative, but 2 genes DQ1, predisposing me to gluten sensitivity. I figured...my tests came back negative, so I went back on gluten. (after about a month gluten free). I did one challenge on purpose, one on accident, during that month, and thought I had a reaction both times, although delayed 2-3 days. Serious D. But when I went back on gluten 2 weeks ago once I received results, I felt really foggy and lethargic the first few days, but other than that, no big difference in symptoms. (While I was gluten-free, I still had some C and gas)

Went to my doc Monday. Talked about what I had done since the last I saw him, and he felt I should go gluten free for longer. Said I had not been on the diet long enough to be sure. He suggested 90 days. I am back on the diet, but I am wondering what the odds are that I really am sensitive. I didn't show a big change (except for what I thought was a gluten reaction explained above) on the diet--I didn't feel a whole lot better, and still had gas. But my body could have just been adjusting the entire month I was gluten-free before.

Anyone else gone through this? I did think it was weird (and maybe I'm reading something into nothing) but my IgA test on Enterolab was 6 units, vs 1 unit from the blood in Jan 05. I was already gluten free when I did the Enterolab test, but it's higher? Or maybe it just picks up more antibodies? Who knows.

Sorry for the long long story! Any insight would be appreciated.

hang in there. I'm in the same boat. I scored negative on blood tests and Enterolab (but I did notice that although both times, my IgA were in the normal range, the blood test showed a 1 unit read, and the Enterolab showed a 6, a year and a half later. Does that mean anything??) I did come up with 2 DQ1 genes (not the major ones for Celiac, but still predisposed) and my sister, brother, and father all have it. So....after visiting my doc, he's told me to go BACK on the diet (I did for almost a month before with some weird results, one really bad result to a bagel, but then when I went off...some IBS troubles but not dramatic problems) for 90 days. So I will. I wonder if a colonoscopy will help...but I can do a diet without having to go through that, so it sounds preferable to me!

Well, here are my test results. Normal. I was gluten free for only like 2 weeks prior to taking it, so I imagine that my numbers weren't all that much higher before.

Fecal Antigliadin IgA 6 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 5 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score 73 Units (Normal Range <300 Units)

Fecal anti-casein (cow’s milk) IgA antibody 5 Units (Normal Range <10 Units)

HLA-DQB1 Molecular analysis, Allele 1 0603

HLA-DQB1 Molecular analysis, Allele 2 0602

Serologic equivalent: HLA-DQ 1,1 (Subtype 6,6)

I do have two genes that are mildly predisposed to have celiac, but aren't the main ones.

I thought I had a positive reaction to gluten since I went gluten free, but it was a few days for the D to set in. I did have weird brain fog and headaches, bloating, though.

If I cannot make IgA, how do they test for that?

So should I try gluten again and see what happens?

Seriously, try that crust from Whole Foods. It's frozen in their bakery, and all you have to do is thaw it and put toppings on and pop it in the oven. It's great! It's not even heavy like so many other gluten free breads.

I made brownies from this Bob's Red Mill Brownie Mix last night....and let me tell you, they're pretty darn awesome! They're even better if you throw chocolate chips in the mix. YUMYUM.

I haven't gotten mine yet.

It's been 2 weeks tomorrow.

I'm getting impatient! I feel like the Jeopardy theme should be running in the background!

I'm at about 48 hours. I get some symptoms right away--brain fog, bloated, headache, feel like I have a hangover the next morning. C for the first 24 hours, then all of a sudden the intense cramping, D, etc lasts for about 6 hours. Of course, I'm new to this, so these may change the longer I go gluten-free.

I've checked all cosmetics, so I know it's not that. I do chew Orbit, which has sorbitol. Hmm...anyone know a good chewing gum that's not gonna do that to me? I'm horribly addicted to gum (used to smoke back in the day, quit 2 years ago) and so I'd like to find something else that's better for me.

I suppose I should log my food. I'm just so ready for Enterolab to hurry up! It's only been 2 weeks though since they received my samples.

Artgirl--I'm sorry to hear you're itching so bad, but in a way, glad to know I'm not alone in that. I have had itching with no visible symptoms too...on my legs only, mostly...and it welts up awful if I scratch. It's gotten better since being gluten-free, but funny thing is, when I play soccer, it gets worse for a day or two. Benadryl and hydrocortisone only barely help. I wonder what it is that causes me to do that.

I've been gluten-free for a month. Better, and did one gluten challenge a week and a half ago, to see for sure that this is the root of my problems. It is...believe me! But I'm still dealing with C (I'll go maybe once or twice a week, tops) and gas/bloating, flatulence (which is nice and embarrassing) even when I eat something I KNOW is gluten free. I hardly eat out anymore, and I've checked labels super-carefully for hidden gluten and the like. I am still waiting for my Enterolab results, but why am I still having these issues? I eat enough fiber. It's getting old! Any ideas? I'm going to try dairy-free and artificial sweetener-free for a while (thinking maybe my Diet Coke causes some issues) but I know that typically when I eat a large amount of dairy at once currently I don't have any more issues than any other time. Arrrgh! Anyone have ideas? Am I just being impatient at letting my body heal itself from the gluten challenge and the gluten eating lifestyle? I was not as severely ill as many of you when I went gluten-free.

You have to ask the chef to be sure. Some queso has chili in it, and some chili has gluten in it.

And Velveeta is Gluten Free. YUM!