does anyone have Celiac Disease & PNA?

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Most of you know my situation. I've had reactions to PN & TN, but I've tested negative for both on SPT & RAST test. I had also tested neg. to wheat, soy, milk & eggs. I've done quite a bit of research on CD, but I can't find much for info on allergy symptoms & CD. I was just wondering if anyone on here has CD & PA, or just CD? I'm still having reactions to nuts & nut contamination, in my opinion.

Thanks for any info.

On Dec 31, 2006

Off the top of my head, using the search function, search for "celiac" with the usernames krasota and LisaM (you'll have to do two seperate searches because I don't think you can search for 2 usernames at once). I'm pretty sure they both have celiac, and have posted about it in the past [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

I know you've been having a hard time of it recently, I hope 2007 goes better for you than 2006.

On Jan 1, 2007

I have one son with PA & TNA and one son with CD. However, not the same kid with both.

On Jan 1, 2007

Hi, yes, I recently found out that I have celiac. I didn't end up going through with the biopsy . . . but I had a positive blood test (and one negative) when nearly gluten free. After going back on gluten (in preparation for the biopsy which we ended up cancelling after all) the blood tests were more positive.

I don't have severe symptoms with gluten-containing grains . . . but I can definitely tell I'm reacting. Oats, rye, barley, and especially wheat make me feel tired + cause some GI issues. I get hives with wheat sometimes . . . but that is related to my wheat allergy. In the days when I was eating a lot of wheat, I used to eat *a lot* and have to eat frequently.

If you want to get tested, it is important to avoid going gluten free beforehand----I've heard that going even partially gluten free can cause false negatives.

There are so many different symptoms associated with celiac that it is sometimes hard to tell without either being tested or attempting the gluten free diet.

Here are a couple of websites that I've found really helpful:

[url="http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/index.htm"]http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/index.htm[/url]

[url="http://www.celiacdiseasecenter.columbia.edu/CF-HOME.htm"]http://www.celiacdiseasecenter.columbia.edu/CF-HOME.htm[/url]

Doctors are often uninformed about celiac disease---it might be helpful to print some of this info. off. Some common misconceptions include:

--not realizing that the full celiac panel should be ordered for testing purposes; believing that people who are overweight can't possibly have celiac disease (*not* true)

--believing that celiac disease is "rare" (recent studies show that 1 in 133 Americans have celiac disease. Most people with the disease are asymptomatic)

--not relizing that the tests aren't reliable if the patient is on a gluten free diet (!!!!)

[This message has been edited by LisaM (edited January 01, 2007).]

On Jan 1, 2007

thanks for all of the info. Lisa M. what were your symptoms exactly with CD. I'll check out the links that you posted.

On Jan 2, 2007

My child is either CD or gluten intolerant, and wheat allergy and peanut allergy. The biopsy was useless because of not being on gluten long enough prior to biopsy, so we don't know. I agree with above post, go back on gluten for at least a couple of months prior to biopsy, I questioned the doctor's nurse prior to biopsy, stating everything I'd read said a week is not sufficient, his nurse said it's ok, just go off for a week, and it wasn't ok, so now we have no idea. I do know my child feels much better being off gluten. We avoid it completely, let me know if you have any questions, need recipes, happy to help.

On Jan 2, 2007

Hi, beachfan. I would love some info. For right now I was going to still eat gluten as I have been. I'm just avoiding all nuts. My excema on my hands seems to be improving, so I'm just not sure if it's because I've been very diligent about abstaining from nuts, or if we've had a warmer winter which could've helped my skin.

What symptoms did your child have from cd? I'm not sure if I've actually had symptoms of cd & just didnt' realize it. I've always had irregular periods.

I would love recipies also. I hope that the dr. can figure out what's going on with my body.

Thanks for your help.

On Jan 2, 2007

Quote:

Originally posted by KIMMO: [b]Lisa M. what were your symptoms exactly with CD.[/b]

Mainly tiredness, slight spaciness, and gastrointestinal issues. Let me know if you have any more questions. Good luck with figuring everything out.

On Jan 3, 2007

Thanks, Lisa. I'm going to talk with my dr. hopefully before the end of the week. He's just finding out about lab work & the details of that.

I'm just not sure if my symptoms really match cd's symptoms, but I also understand that some people don't even show any symptoms.

Thanks again.

On Jan 3, 2007

KIMMO,

I hope you get some answers from your dr. Keep us posted on how things go. I know one person who was tested by a dr. at a well known research hospital . . . that dr. only ordered the one test (EMA). In my opinion (and in the opinion of the NIH and the dr's at the centre for celiac disease research at Columbia University) it is important to order both the anti-tTG test and the EMA. The EMA is more specific (i.e. if it is positive it almost definitely means celiac disease) but less sensitive (more room for false negatives). My dr. also ordered the antigliadin test which is automatically included in the celiac panel, I think. I've also heard that they are supposed to test for IgA because if you have an IgA deficiency it could mess up the test results . . . I'm not entirely sure if I got that right, though. (one of those sites I posted probably has info. on this.)

On Jan 3, 2007

I have both. There's a strong possibility most of my food allergies were caused by the gut damage of CD, but we'll never know. My PA seems to be secondary to my ultra-nasty soy allergy. I can tolerate peanut oil and don't need to worry about peanut cross-contamination.

My symptoms for gluten include gluten ataxia (which includes just about any symptom in the MS diagnosis list), overwhelming fatigue (CFIDS, currently in remission), IBS-D, fatty orange stools, itchy rashes, psoriasis flare-ups, joint pain, vitamin/mineral deficiencies, etc.

Most of those symptoms are no longer present, thanks to a strict GF diet. And testing for CD wasn't accurate for me, due to many reasons. Thanks to the development of an IgE wheat allergy, I couldn't pursue testing via endoscopy.

ygg

On Jan 3, 2007

Thanks, krasota & Lisa. I'm still not sure about my symptoms, though I wonder if because I've been possible undiagnosed CD, if that could've caused my PA & TNA as well. I don't have any runny or funky looking stool, but I do tend to be constipated more than diarreah. I have never seen constapation as a symptom of CD.

I'll keep on investiagating. Thanks for all of the specifics about which tests to have. I'm going to print them out so that I can talk with my dr. about them.

Thanks for being so helpful.

On Jan 4, 2007

Non-typical presentations of CD are starting to be recognized. These include weight gain and constipation.

And some folks have neuro symptoms with no intestinal involvement. The current issue of [i]Living Without[/i] magazine has a great article on gluten ataxia.

ygg

On Jan 4, 2007

Thanks, krasota. Is that a magazine that you subscribe to? I have gained about 30 lbs. since about summer time....I'm an emmotional eater. I wish that the PA would've caused the opposite where I would've lost 30 lbs., but I guess it stressed me & I found other things I could eat.... I know my weight gain is very much a lack of self discipline. I'm working on it very hard. I just don't stay the same weight, I go up or down. I don't maitain. I exercise 4-5 days a week. But I absolutely crave carbs & whole grains. 98% of the carbs I eat are fresh whole grains. I grind my own wheat berries & make my own bread & goodies. We eat out about once a week.

I've been eating more fruits & veggies. I'm going to call my dr. tomorrow to find out what's going on with the testing & when I can go have the blood work.

Thanks for your info!

On Jan 4, 2007

I lost a lot of weight when I went GF. I ate tons of wholegrain breads, too, and often baked my own. My favorite snack was black russian bread with a GOOD butter and butterkase. Oh, yum. We ate tons of whole wheat, rye, spelt, and barley. I baked with wheatberries and threw barley into every single soup.

I don't subscribe to LW, but I should. I buy it when it comes out on the stands.

ygg

On Jan 5, 2007

Krasota, where can you find the LW magazine? Is it where regular magazines are sold? I'll be looking out for it. How long have you been gf?

On Jan 6, 2007

I buy LW at Whole Foods. I haven't seen it at my local co-ops.

I've been strictly gluten-free for a bit over two years.

ygg

On Jan 7, 2007

I'm going to the get the bloodwork this week at some point. If the the test comes back neg. then my dr. told me that he would like for me to go gf for 2 months. How strict does that mean? I usually grind grain & make bread for my family. Does that mean I can't do that durring this period? I'll try to get more info from the dr. as well. I didn't know how sensitive gluten can be & how far I should take precautions, if that makes sense.

Thanks

On Jan 8, 2007

If you're strictly gluten-free, you need to make sure you don't consume any gluten. You can't use any previously used non-stick cookware, cast iron, wood, or stoneware (it all holds on to gluten). Colanders are also gluten-contamination zones.

You'll need to wash your dishes and utensils before using them because you've likely got TONS of flour dust in your house. That stuff gets everywhere.

And yeah, you'll need to be strict. Most folks with CD can't bake for others because the risk of ingesting flour while mixing/grinding is too high. You can try it, but you may not get definitive results.

ygg

On Jan 8, 2007

And I imagine the grinder will be off limits (probably difficult to clean free of gluten).

I use a coffee grinder to grind up rice . . .it doesn't grind it fine enough for flour, of course, but it is great for making rice porridge.

ygg, I started thinking seriously about getting cd checked out after you mentioned on another message board that my symptoms were suggetive of cd--thanks very much for the suggestion! It took me awhile---I first mentioned it to my allergist, and his response was "you don't have celiac disease." (But he didn't ask me about my symptoms, etc.) Another doctor sent me to a GI doc for something else . . . I was going to ask him to test me for celiac as well, but he decided to on his own after hearing that I don't eat wheat and that oats were causing GERD.

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