Kat L

I would be A-OK if I only had a problem with lactose and not with casein (e.g., could eat aged cheeses but not fresh milk or ice cream).  I actually randomly came across some articles while browsing Wikipedia that say that the peptides that result from digestion of casein and gluten proteins actually have an opioid effect on the brain (see wiki articles on casomprohins and opioid peptides).  It makes perfect sense that I am truly a cheese junkie...just jonesing for a cheddar fix...

I'm looking for some good storage containers to keep the various gluten-free flours organized.  The POP containers from OXO seem pretty good, but they're pretty pricey: Open Original Shared Link

I was thinking of using chalkboard re-writable labels to label them and keep them straight, although I'd kind of like to keep the original package label with them as well...

Has anyone come up with a better/cheaper solution to the problem of too many flours?

Thanks!

I just got my HLA-DQ typing results back, and I'm not entirely sure how to interpret them.  I know that I'm positive for HLA-DQ8 and therefore am genetically predisposed to the potentially developing celiac.  But, what I want to know is if there's anything else that can be gleaned from the results, including whether I have 1 or 2 copies of the genes?  My dad's had a number of the same symptoms as I have for many years and is on the verge of trying gluten-free.  If I was able to tell him that I have 2 copies of the gene and therefore he has at least 1 himself, it might push him over the edge into actually giving it a shot.  

My results:

         Hla-Dq2:   Negative

Background on me - I had negative IgA tests and endoscopy (while eating gluten), but also had low vitamin B12 and D3 results.  My symptoms are definitely consistent with celiac and have improved IMMENSELY while being gluten-free (3 months and counting).  When I have accidentally had gluten (once in ibuprofen pills and once in an Odwalla juice drink) I've had a severe reaction that lasted 3+ days, which was the same reaction as when I purposefully ate pizza to test it.  So regardless of the test results, I'm operating under the assumption that I have celiac...and happy for it.

Perhaps there was wheatgrass or barley grass in your Odwalla? Most people do not react, but some do.

Yes, there was wheat grass, barley grass, and wheat sprouts in the Odwalla. Like I said, it was a bonehead thing not to check.

I got my biopsy results the other day, and they were normal (6 samples, normal). Other than a mild Schatzki ring and sliding hiatal hernia, the doc said everything was normal and nothing would explain any symptom other than a little heartburn. I, however, am not convinced. I've stopped eating gluten and will give it a month or two, and see how many of my symptoms resolve. I also plan on getting a 2nd opinion from another GI. But, at the same time, I'm concerned that if the GI is right and I don't have celiac, that I could be missing the real source of my problems.

So, I have 2 questions:

1) Is there anything else that can cause B12 deficiency?

As far as I know, there's not eating meat or dairy (which is definitely not the case for me), Grave's disease (I'm overweight, not under weight so I don't think hyperactive thyroid is my deal), and pernicious anemia/lack of intrinsic factor (my primary has ordered a test for intrinsic factor in February along with follow-up B12, so we'll see if that's the case pretty soon). Is there anything else that's a possible cause? My B12 was at about 300, and that's with me periodically (not routinely at all) taking a B-complex vitamin supplement.

2) When you get glutened, generally how long is the delay between eating gluten and a reaction?

I've been gluten free for 8 days so far. I haven't had my most common symptom, which is really extreme bloating, all week - that is until last night after dinner when I blew up like the staypuff marsmallow girl. I went through everything I ate all day yesterday and I'm sure I didn't any gluten. Then I realized that the day before I did totally gluten myself. I had one of those green Superfood Odwallas for breakfast and didn't check the label at all- like a total bonehead, I thought it's just juice! no gluten to worry about. BUT, that was about 36 hours before I got the bloating. So, is it possible that the Odwalla caused my bloating? Or is this all a coincidence? Either way I'm going to stay off gluten and in another week or so purposely test myself with something gluteny.

Yes, my doc did give me a printout of some scope pictures. There's nothing in these pictures that looks like you describe, though the copies I have are black and white. I'll get the full report after the biopsy results are in. To have EE, wouldn't I also have elevated levels of eosinophils in my blood? The results of a blood test from October show that I had 2% eosinophil (relative) and an absolute concentration of 0.3 K/uL.

I had my EGD today and it'll be about a week before I get the biopsy results back. But, the doc did give me her observations. Apparently I have a sliding hiatal hernia and a Schatzki ring (mild, non-obstructing) - and everything else looked normal. I haven't been able to really talk to my doc about it yet, because I was pretty out of it and didn't have such a great reaction to the sedation. From what I've gathered reading on my own today, it doesn't seem like either of these are a big concern right now, but should be watched to make sure they don't get worse.

I wonder if the hernia could have been caused by my constant severe bloating. I have often noticed that after a big meal, particularly when I'm with other people and can't burp, that I have trouble breathing. Does anyone have any experience with either a hiatal hernia or a Schatzki ring?

Thanks everyone!

I contacted my doctor's office and they confirmed that she will only be doing an upper GI and that the MoviPrep was completely in error. I also asked them to double-check the scheduling with the surgecenter and what they've sent to my insurance company.

My endoscopy isn't scheduled until December 28th, so they should be able to get it figured out by then. Though, this kind of thing does nothing to booster my confidence in this doctor or office... Nothing worse than a surprise colonoscopy!

When I called to schedule my endoscopy with my doctor's scheduling nurse, she asked me whether I wanted movie prep or something else. I didn't know what she was talking about and the doc hadn't mentioned anything like this to me. I had to check on something with my insurance before scheduling the procedure. When I called back later that afternoon she said that she checked with the doc and I didn't need movie prep or the like. Almost a week later, I got a call from my pharmacy saying a Rx was ready and when I went to pick it up, it was MoviPrep - a mega-laxative to prepare you for a colonoscopy. I didn't accept the giant box-o-laxative and told the pharmacist I had to check with the doc first.

The instructions and brochure they gave me about the endoscopy didn't say anything about a laxative and I think this a mistake. I plan on calling tomorrow to ask...but at the moment I'm a little confused and am beginning to lose confidence in this doc, or at least her office... Has anyone else had to do a mega-laxative before an upper GI endoscopy? Or is this likely a mistake?

Hi everyone,

Thanks for your responses. I started a gluten bucket list, and I've been going through it, eating all the things I think I'll miss. For a couple of days I was feeling somewhat better, but that all collapsed yesterday (two of my favorite bakery's english muffins that were going to go stale and a 1/2 a bagel--yeah, not the best idea after all) in the big D and hives, along with an insatiable itch.

The good news is that I got an appointment with a gastro for next week, after being told I'd have to wait until January. I can't tell you how depressing that thought was--that I'd have to suffer like this until January (and beyond, assuming all the tests would not be instantaneously performed).

I am also thinking I may have to change primary care physicians, but I'm waiting until I get in to see the gastro to do so. In the meantime, I've been Googling every symptom I've had over the past 10 years or so, along with the word celiac, and I am shocked that they're all there. Even my hair color may put me at risk--is that me being insane, or is it more insane that nobody's ever connected the dots before this?

Anyway, I'm hanging in there, but not happily. There's a cloud over me, a big dark glutenous mass of a cloud.

Thanks again for listening.

Ruby

Ruby - I'm a very similar situation to you right now. I'm fairly sure at this point that I have a gluten problem (though, the blood tests I had were negative) and I'm counting down the days until my endoscopy (39 long bloaty days to go).

I also put together a bucket list of my favorite gluteny foods, partially to have them one last time and partially to feel like I have some kind of control over the situation. Right now, I am not eating gluten at breakfast or lunch, but making sure to eat it for dinner everyday. That way I pay close attention to what I eat and how it makes me feel. Also, I have less of the brain fog and other distracting symptoms during the day when I need to focus at work. I've found that when I have something I really love and was certain I was going to miss (like jalepeno cheddar bagels) and then feel terrible after eating them, I feel much better about the idea of giving them up. Plus,since I'm only eating gluten one meal/day it's much easier to observe the type of reaction I have to them.

You're definitely not alone. Just keep thinking about the light at the end of the tunnel, where you get to start healing and those symptoms start slipping away...

hey that's so interesting that your doc was concerned about Parathyroid with low D, ihad never heard of that before.

what about a full thyroid check up? have u had that??? so many of us have both Celiac & thyroid disease, and many that are Gluten intolerant or gluten sensitive also have thyroid disease.

Thyroid disease ALSO screws up your digestion- cause you make less of everything-> including stomach acid, pancreatic enzymes, motility , etc

my opinion is that a Vitamin D deficiency often points to Autoimmune Activity... your immune system needs D3 to work properly-> and when you're autoimmune you use it all up.

also- your B12 is TOO LOW.. you should strive to get it above 500 or 600... alot of our "ranges" in the U.S. are way too big and are more interested in Disease Management instead of Healthcare

I hadn't realized that the B12 range was so much broader than it should be. I figured that it was likely, and really most vitamin results near the bottom of the "normal" ranges are generally suspect.

Re: thyroid disease, I've actually had my thyroid levels checked every year for the past 6 years (at my annual gyno exam and every time a doc tries to figure out what's wrong with me). This is because, as the story goes, my mom had a lump on her thyroid removed when she was in her 20s. According to my dad it was just a lump, found not to be malignant, and they didn't know what it was but they took it out along with half of her thyroid and then she took syn-thyroid for the rest of her life. So, with that in mind, my thyroid hormones are always and thus far have always been normal. My last TSH result from a little over a month ago was 2.50 uIU/mL.

Re: parathyroid, the parathyroid regulates calcium levels in the blood, and vit D aids in absorption of calcium by the intestines. So, if one's parathyroid is overactive (usually as a result of a tumor) then blood calcium levels in the blood are too high, being leached from the bones, and the body suppresses vitamin D production. So, after I had the vitamin D-deficient result, I went to an endocrinologist. Apparently, the parathyroid glands are still a bit of a mystery to many doctors (much like celiac) and in the early 1970s I'm sure doctors were even less knowledgeable. And like celiac, hyper-parathyroidism is also still an underdiagnosed disease. So, my working theory at the time was that perhaps the mystery lump on my mom's thyroid was actually a parathyroid tumor. (People typically have 4 glands, sometimes more, and their locations can vary quite a bit, including being inside the thyroid entirely). This was particularly concerning as thyroid tumors, which cause hyperactive thyroid but are not cancerous can be a result of multiple endocrine neoplasia, a disorder that also can cause stomach cancer. And...my mother died of stomach cancer when she was 45. So, I asked the endocrinologist to check my parathyroid hormone levels and she also did an ultrasound of my thyroid/parathyroid. All was normal.

I've had broad autoimmune-like symptoms for many years and at several times, doctors have strongly suspected that I had an autoimmune disease but were never able to diagnose it. None of them had ever suggested celiac to me. The first time I went through this I was in college. Repeated blood tests showed I had elevated sedimentation rates, despite being otherwise, outwardly not sick. After months of repeated elevated sed rates and no positive results for the standard autoimmune diseases, I gave up and stopped going back to the doctor. At that time, I actually had had a surgical steel screw in my foot, and since shortly after I had it put in I became allergic to all of my earings, I figured that I had developed a metal allergy of some sort. This is pretty consistent with the latex allergy I have, which is not an actual latex allergy but rather a sensitivity to the hardeners in latex products - common in people who have had surgery as a baby. I figure I'm just predisposed to developing sensitivities to foreign objects/chemicals in my body.

A few years ago, I had an orbital myositis in my right eye. Basically, one of the muscles that moves the eye swelled to 3-4 times the size it normally was and was INCREDIBLY painful. It took a few weeks to diagnose properly, but fortunately I was able to see a neuro-ophthalmologist, after having a complete meltdown on the phone with a nurse who squeezed me in right away instead of making me wait a month. According to the neuro-ophthamologist, orbital myositis can either be an autoimmune symptom or can be caused by a virus completely randomly setting up shop in a muscle. After 9 vials of blood being from my hand that day, because the lab couldn’t succeed in finding a vein in my harm….all those tests came back negative. About a month before the eye problem, I had a campylobacter infection (intestinal infection not dissimilar from salmonella – more common in Europe than the U.S. –WOO that was a fun vacation!). Wanting to make it back to the states by Christmas, I flew back home despite still having crippling intestinal umm…issues. Not exactly the smartest thing I’ve ever done, considering by the time I made it home I was so dehydrated I had chest pains. Also, in addition to the food poisoning, I picked up a nice plane-virus. When the autoimmune results came back negative, it was reasoned that the cold virus took up shop in my eyes, since I was probably pretty immune-compromised at the time.

MSG – 12 years? Do you know what the relationship between gluten and MSG-sensitivity is? Beginning about 12 years ago, I started developing weeping rashes on my face and forearms from MSG.

Sorry for rambling on about my various medical mysteries, but it's nice to type it all up in one place. Or - most if it in one place. I also have some physical birth defects that have their own set of doctor stories. One thing is for sure, I’ve seen A LOT of doctors over the years. Some of them very good and some of them quite terrible.

I asked my doctor about the additional tests, and her response is basically that the tests I've already had have the highest specificity for celiac and therefore provide as much information as we're going to get. Her full response is below:

Have other people experienced results where these less sensitive, less specific tests are positive but the three initial tests are negative?

Also, when I asked her how many biopsies she typically does to screen for celiac, she said from 2 to 12 depending on the visual condition of the intestine. If I ask her to take at least 6, regardless of the visual, I doubt she'd have any problem with that. So, I think I'll schedule the endoscopy with her soon.

CassP and Lisa, Thank you for the advice! I'll email my doc and ask about the additional tests and how many biopsies she'd do. I'll either be scheduling the endoscopy or finding another doc for a 2nd opinion.

Here are my recent vitamin results. After I get the low vit D result, I saw an endocrinologist who ruled out parathyroid disease.

Component Your Value Standard Range Units Date

Vitamin B12 297 211 - 911 pg/mL October 2012

Folate 13.7 >5.4 ng/mL October 2012

VitD,25-Hydroxy Tot 71 30 - 100 ng/mL May 2012, after supplements

VitD,25-Hydroxy Tot 12 30 - 100 ng/mL December 2011

Magnesium 2.0 1.8 - 2.4 mg/dL January 2012

I also have annual blood tests for work. I don't have those results handy, but I'm always on the low side for iron. I forget what if any of the other minerals skew low.

Lisa -

I've had a number of generalized symptoms for years (fatigue, joint pain, muscle pain, tingling/numbness in my arms and legs, gas, frequent urination, heartburn, brain fog, heat/cold intolerance, nausea, trouble sleeping, overweight and don't lose weight on a strict 1200-1400 calorie diet...sound familiar?). I've gone to the doc a few times and have had SO many tests done - lupus, polycystic ovary disease, diabetes, thyroid disease, parathyroid disease, rheumatoid arthritis, etc. etc. with everything coming back negative. The only thing that ever came back as a problem was last December, I was vitamin D deficient. I took supplements and got my vit D back up, and feel a good bit better, than I did last December, but certainly don't feel like I should for being only 30 y/o.

I'd come across celiac symptom lists before, and even though they fit pretty well I was definitely in denial. That is, until I had a bit of a gluten vacation. I was traveling and most of the meals I had were gluten free, or just had bread as an after-thought, so I half-purposefully/half-by-chance avoided gluten for a little over a week. Then...I went to Italy. My gastro-symptoms came back with a vengeance. I'd get these crazy muscle/nerve pains about an hour after I'd eat, which would gradually go away over the course of 4-5 hours. This kind hyper-sensitivity lasted for about 2.4 weeks until I got back to my normal malaise.

One other piece of info is that my mother died of stomach cancer when she was 45. It's possible that she had untreated celiac, but I was too young to notice any other symptoms she may have had.

I saw my primary after I'd been back on gluten for about 2 weeks. (My gluten-vacay had only been about 1 week, and I certainly was not strict about it). My primary agreed that it sure sounded like gluten sensitivity and ordered the celiac panel I listed above. After the negative results, she still thinks it's gluten-sensitivity and referred me to a gastro. The vitamins all came out within the normal range, though B12 was on the lower end of normal and I've always been on the lower end for iron. That was over a month ago, and I've been eating gluten the whole time, working through a bit of a bucket-list of my favorite gluteny foods.

I saw a gastro for the first time yesterday and when I asked her about additional blood tests she said that other than the HLA tests, those were all of the tests she knew about. She said we could do endoscopy, although she very much wants that to be my decision and was not pushy either way. I get the feeling that if I were to identify additional blood tests she wouldn't have a problem ordering them, as she said I could do the HLA typing if I wanted to. I didn't really want to do the endoscopy at first, but I am leaning the other way after she mentioned that given how young my mom was when she had stomach cancer that I should be doing some stomach cancer screening (be it endoscopy or the barium x-ray) every couple of years.

So, that's my story. At this point I'm pabout 98% convinced that I have a gluten-sensitivity, whether it's celiac or not. I will go gluten free as soon as I'm satisifited that I've done all the testing I should. (I am a scientist, so I like data...more data, is always better). I'll give gluten-free a chance for a few months in my normal setting (not traveling), and assuming I see the same changes, that'll be that. I just really want to the tests done, so I can start. Well, that is after I finish my bucket-list (still need a chocolate croissant and truffled mac and cheese).

Below are the blood tests my primary care doctor ran for celiac, and the results. She also ran a number of vitamin levels as well. I know there's the HLA-DQ typing, but other than that are there any other blood tests for celiac that I should ask her about? Or is this pretty much it? I have a hard time translating between the various abbreviations/shorthands for the tests I've seen mentionedon the forum... Thanks for any help you can provide!

Component Your Value Standard Range Units

TTG Ab, IgA 1.3 <7.0 U/mL

Negative <7.0

Equivocal 7.0-10.0

Positive >10.0

Gliadin DGP Ab IgA 2.5 <7.0 U/mL

Negative <7.0

Equivocal 7.0-10.0

Positive >10.0

IgA 367 87 - 474 mg/dL

I have my first visit to a gastroenterologist in 3 weeks and I'm wondering what to expect?

I saw my GP a little over a week ago and (without boring you with all of my symptoms and history) she said it sure sounded like gluten sensitivity and ran the bloodwork for celiac. The bloodwork came back negative (results below) but she said she still thinks it could be gluten sensitivity and wants me to see a gastroenterologist.

TTG Ab,IgA - 1.3 U/mL

Gliadin DGP Ab IgA - 2.5 U/mL

IgA - 367 mg/dL

With negative bloodwork is she likely to want to do the biopsy? Are there other blood tests they could/should do? If the only treatment for celiac is eating a gluten-free diet what's the point of going through the invasive/expensive/at least somewhat risky biopsy? For those of you who've been diagnosed with celiac, do they do any cancer-screenings or really anything that needs some kind of confirmation?

Sorry, I'm feeling a bit overwhelmed and going nutty having to wait another 3 weeks to see the specialist. I'm really frustrated having to keep eating gluten and feeling pretty miserable after having taken a short (~1.5 week) gluten-vacation and having had most of my symptoms go away. Even though I've been feeling terrible for years, it makes it 100 times harder to tolerate my usual malaise.