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Refractory Sprue
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I was diagnosed with celiac disease in Feb 2010, but I've probably had it for many years. I had a followup endoscopy today to evaluate for refractory sprue. I've also had enlarged mesenteric lymph nodes over the course of 3 CT scans with the most recent one last week after adhering to a gluten free diet since Feb. After today's endoscopy, my GI doctor says I still show signs of celiac disease, but he wants to wait to get my biopsy results to determine whether he would classify me as having refractory sprue. My concern is that the doctor doesn't seem concerned about lymphoma although I've read that long-term, untreated celiac disease can lead to t-cell lymphoma and I've been feeling crummy with fatigue and low grade fevers. Now that I know it doesn't look a lot better and I still have enlarged lymph nodes, doesn't that raise some concern? Has anyone been in a similar situation? What were your findings? I don't want to worry, but I want to be sure he's checking all avenues and I'd love to start feeling better. Thanks for any input!

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There is an increased risk for T-cell lymphoma with refractory sprue, you're correct. But it's not a guarantee by any means. The feeling crummy and low-grade fevers sounds like your immune system is active, which sounds exactly like what we'd expect from a refractory sprue.

When was your last blood work? Lymphoma is often found after abnormal numbers found on routine blood work (specifically what I'm talking about is the CBC, or Complete Blood Count, with differential: it shows which blood cells are present in what proportions).

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I was diagnosed with celiac disease in Feb 2010, but I've probably had it for many years. I had a followup endoscopy today to evaluate for refractory sprue. I've also had enlarged mesenteric lymph nodes over the course of 3 CT scans with the most recent one last week after adhering to a gluten free diet since Feb. After today's endoscopy, my GI doctor says I still show signs of celiac disease, but he wants to wait to get my biopsy results to determine whether he would classify me as having refractory sprue. My concern is that the doctor doesn't seem concerned about lymphoma although I've read that long-term, untreated celiac disease can lead to t-cell lymphoma and I've been feeling crummy with fatigue and low grade fevers. Now that I know it doesn't look a lot better and I still have enlarged lymph nodes, doesn't that raise some concern? Has anyone been in a similar situation? What were your findings? I don't want to worry, but I want to be sure he's checking all avenues and I'd love to start feeling better. Thanks for any input!

Hey there. I have a similar situation. I was diagnosed with Celiac back on 2005 and I did really well on the gluten-free diet for about a year and then I got progressively sicker. I was with this one doc who was treating me for inflammatory bowel disease (specifically crohn's)...even though I did not have a positive biopsy for it. All my biopsies would come back with non specific inflammation. I decided it was time to get with a new doc and sure enough he uncovered that I still had active Celiac even though my bloodwork was clean for gluten ingestion...which prior to going gluten-free it was not. I like you have several enlarged mesenteric lymph nodes the largest of which is 1.5 cm. I also have constant low grade fevers typically around 100-101 and of course the lovely fatigue to go with it. I had the same concerns about lymphoma but my doctor is not at all concerned at this time. They have been treating me on and off with steroids but to be honest the biggest change for me came from identifying food allergies that I had developed. In my case I had to cut out beef, yeast, avocados, bananas, and a few others. I am also lactose intolerant but I knew that years ago. I am still not great but once I addressed the food allergies I gained like 15lbs in about 3 months...which for me was a bad thing since I was a bit chubby to begin with :) but it goes to show you just how much of your food you are not able to digest properly.

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My GI thinks that refractory sprue comes from trace gluten in the diet. Do you eat any processed foods? Have you tried a whole foods diet? That worked for me.

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I was diagnosed with celiac disease in Feb 2010, but I've probably had it for many years. I had a followup endoscopy today to evaluate for refractory sprue. I've also had enlarged mesenteric lymph nodes over the course of 3 CT scans with the most recent one last week after adhering to a gluten free diet since Feb. After today's endoscopy, my GI doctor says I still show signs of celiac disease, but he wants to wait to get my biopsy results to determine whether he would classify me as having refractory sprue. My concern is that the doctor doesn't seem concerned about lymphoma although I've read that long-term, untreated celiac disease can lead to t-cell lymphoma and I've been feeling crummy with fatigue and low grade fevers. Now that I know it doesn't look a lot better and I still have enlarged lymph nodes, doesn't that raise some concern? Has anyone been in a similar situation? What were your findings? I don't want to worry, but I want to be sure he's checking all avenues and I'd love to start feeling better. Thanks for any input!

I also continued to have symptoms (bloating, gas, cramping gut pain) long after I abstained from gluten (and dairy) following my Enterolab diagnosis in 2004. Initially I suspected additional allergies and did ELISA (blood tests) for IgG (delayed reaction) food allergies. Those tests revealed 4 more allergies (eggs, cane sugar, vanilla and nutmeg). Another Elab test revealed soy allergy. Eliminating all those foods greatly reduced my symptoms. However my naturopath also suggested I take a stool test for intestinal infections from bad bacteria, parasites and/or candida (yeast/fungi).

In 2006 my stool test results showed Klebsiella (bacteria), which I treated, but I still had gut symptoms. The next stool test showed my good bacteria were too low. So I took lots of probiotics, but still had symptoms. The next (2007) stool test showed Enterobacter cloaecae, which I treated. The next (2008) stool test showed Cryptosporidia (parasite) and candida, which I treated. The next (2009) stool test showed C-diff (pathogenic bacteria), which I treated. The next (2010) stool test showed achromobacter (bacteria) which I treated. The next (2010) stool test showed H. Pylori and Dientamoeba fragilis (parasite).

After 2 unsuccessful treatments for d-frag, I found a doctor who wanted to do more than test me and treat me for gut bugs. She prescribed an effective antiparasitic drug, which eliminated the d-frag critters, ordered a Heidelberg capsule test (for stomach acid production) and blood tests for thyroid function, vitamin D, ferritin, cholesterol, etc. The Heidelberg capsule test showed hypochloridia, which explained why I kept getting gut bugs. Normal amounts of stomach acid kill food born bacteria, but my low stomach acid allowed those bugs to go straight to my intestines and proliferate. Also blood tests showed I had low vitamin D, low white blood cells, anemia and low thyroid function, all of which reduced my immunity or ability to fight infections.

So I'd suggest you get allergy tests, stool tests for gut bug infections, and blood tests for vitamin/mineral deficiencies, thyroid function and maybe adrenal function. I suspect I had celiac disease for at least 20 years before I was diagnosed. So I developed all kinds of deficiencies and a few autoimmune problems before I was finally diagnosed with celiac disease when I was 56.

SUE

PS My last stool test was negative for new critters (and old ones). I have normal digestion with no gas, bloating or cramping pain, thanks to HCl supplements to restore my stomach acid and mucho high dose probiotics.

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Re: the refractory issue...

I tested still positive on the blood tests for getting gluten at my 6 month check. My doctor at the time thought it might be allergens/intolerances that I hadn't eliminated yet. He said those can cause the body to not heal very well.

I dropped those, and was still having trouble finding things to eat that didn't make me feel sick (had a VERY limited diet for a while) and since then, I have found out that I react to really, really tiny amounts of gluten. My family now has 4 diagnosed celiac and one suspected one, and there are differing levels of sensitivity just within the family. I got the dodo prize with extra sensitivity. ;)

Something that might help you see if this could be it? Perhaps drop all processed food for a week or so (that includes any salt, oil, spices), and drop all grains for the same week (Grains are often grown together, harvested with same machinery, transported and milled together - lots of places for cc to happen in small amounts). Then peel all your veggies and fruits to avoid any contamination there, from coatings, pesticides with gluten binders, or even just gluteny hands from other consumers touching the produce.

If you tried this for a week, and felt a little better, it might be a clue to help you figure out how to feel better. Perhaps it wouldn't even be gluten, but another food issue, but at least if you did this, you'd have some place to start.

Oh! Keeping a food journal along the way to see what you eat, and how you feel, could be useful.

And something that I never thought about but now have to when I'm feeding my kids: it can help to remember that 'gluten free' is really 'very low gluten.' Which means that if you eat a lot of it, you can still get too much gluten for the day and start reacting. Kind of like eating too many low calorie foods can get you fat, ya know?

Wishing you the best of luck, and hope you find the answers soon!

And one last thing: I think that if you don't feel like your doctor is pursuing the right avenues, or listening to your concerns on this, you should most definitely find someone different. I ran into that with an allergist a few months back, where he had 'all' the answers, but it felt like he was ignoring signs and symptoms that I had. I was just going to suck it up and leave it alone, but my husband pestered me to find a new doctor who actually DID listen. When I did, that man figured out exactly what the problem was.

I try to remember that when I'm hitting snags: gotta listen to that little voice in our head when it's telling us that the doctor isn't paying attention, or is dismissing something without seeming to considering it properly. I think that usually that little voice is right on the money.

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Has the Dr tested you for Lyme Disease?

Your Dr is right on to test for parasites. The US Center for Disease Control has been telling Drs for more than 5 years that parasites are more common than they had thought and this has spurred more research into parasite problems and diagnosis. However the usuall stool tests are very poor at finding them. New molecular DNA enteric panels from Metametrix or Diagnos Tech Labs are very much better and they also id many other organisms which cause enteric and other problems, test for Celiac antibodies which is more likely to find them than the blood tests and also do some tests for other intestinal imbalances.

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I've been gluten-free since 1998. However, since I was also diagnosed w/Barrett's Esophagus (BE) at the same time, my GI doc does an endoscope every two years. My most recent one, this past December, reveals flattened villa, etc., all evidence that the celiac disease has returned. Since he considers me his most 'compliant celiac' patient, my doctor is surprised and has mentioned refractory sprue which terrifies me. This past year I've lost almost 40 lbs (very slowly but still) and have a sudden onset of severe osteoporosis....all indicators, along w/flattened villa, that my celiac disease has returned. The only culprit my doctor suspects is hidden gluten in my medications which I need to investigate further. I'm also rechecking foods I eat on a regular basis like salad dressing and ice cream. (Here, I MUST put in a plug for Kroger supermarkets......every one of Kroger's products has an 800 number, staffed until 8:00 EST. This makes it so easy to check on products. It is a wonderful service and I praise Krogers every chance I get. And BTW, I am not affiliated w/Kroger in any way).

At any rate, my doc seems to think that the only viable treatment at this point (once we've eliminated the possibility of hidden gluten) is cyclosporine - a very toxic med. I believe steroids are the first line of defense for refractory sprue but since I'm osteoporatic, can't do the steroid bit. Ironically, I know a lot about cyclosporine as my 3 year old grandson had a heart transplant at 8 months old and recently suffered from kidney failure. Cyclosporine is very toxic to liver and kidneys.

Anybody out there have any words of encouragement? I'm as compliant w/this gluten-free diet (which I hate) as I can be and now this. Thank goodness I'm my doctor's most 'compliant celiac disease patient' - I'd hate to think of where I'd be if I weren't so.

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At any rate, my doc seems to think that the only viable treatment at this point (once we've eliminated the possibility of hidden gluten) is cyclosporine - a very toxic med.

I was symptomatic until I stopped eating processed foods. In fact, I had to give up salad dressings very early in my list. I personally wouldn't try a "very toxic med" until I tried a whole foods diet. There are many celiacs who cannot handle the trace amounts of cc which can appear in gluten free foods.

http://www.fda.gov/downloads/Food/ScienceResearch/ResearchAreas/RiskAssessmentSafetyAssessment/UCM264152.pdf

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I agree. I'd go to a diet of 100% unprocessed whole foods before I accepted a diagnosis of refractory sprue. What I would eat (which is mostly what I eat now myself) is meat or fish you cook yourself, raw vegetables, home-cooked beans, fruits, and plain nuts. I would avoid grains completely, but at a bare minimum avoid oats and corn.

As well as all the trace gluten CC in grains and grain products, there are a few celiacs on the board who react to corn as if it were gluten and it's not even remotely on the medical radar. We only know about these kinds of rare reactions because there are more celiacs on the board than most doctors get to see in a lifetime.

We're also seeing growing evidence that dairy can be a real problem for some celiacs so I'd eliminate that next if I didn't start feeling better and gaining weight.

By the way, I'm grain-free except for some unavoidable corn in a medication, dairy-free, nightshade-free and do not eat many processed foods so I know how difficult it is. My digestion is much better that way.

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WOW....and I thought the regular gluten-free diet was TOUGH. Thanks for the two replies - it is something to consider. The odd thing is that I haven't been feeling bad; its the weight-loss and endoscope that alerted my doctor. Today, however, I ate a gluten-free rice hot cereal by a well-respected manufacturer and have felt crummy, crummy all day. I'm sure it can't be that easy to discover the culprit but fingers crossed. I'm avoiding that hot cereal for awhile and will call the manufacturer to determine if there's a possibility of hidden gluten.

I live in GA so if we can't turn up anything by next month when I see my GI doc again, I'm going to ask him for a referral to see Dr. Rupert. It sure can't hurt. Again, thank you for your replies.

I agree. I'd go to a diet of 100% unprocessed whole foods before I accepted a diagnosis of refractory sprue. What I would eat (which is mostly what I eat now myself) is meat or fish you cook yourself, raw vegetables, home-cooked beans, fruits, and plain nuts. I would avoid grains completely, but at a bare minimum avoid oats and corn.

As well as all the trace gluten CC in grains and grain products, there are a few celiacs on the board who react to corn as if it were gluten and it's not even remotely on the medical radar. We only know about these kinds of rare reactions because there are more celiacs on the board than most doctors get to see in a lifetime.

We're also seeing growing evidence that dairy can be a real problem for some celiacs so I'd eliminate that next if I didn't start feeling better and gaining weight.

By the way, I'm grain-free except for some unavoidable corn in a medication, dairy-free, nightshade-free and do not eat many processed foods so I know how difficult it is. My digestion is much better that way.

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WOW....and I thought the regular gluten-free diet was TOUGH. Thanks for the two replies - it is something to consider. The odd thing is that I haven't been feeling bad; its the weight-loss and endoscope that alerted my doctor. Today, however, I ate a gluten-free rice hot cereal by a well-respected manufacturer and have felt crummy, crummy all day. I'm sure it can't be that easy to discover the culprit but fingers crossed. I'm avoiding that hot cereal for awhile and will call the manufacturer to determine if there's a possibility of hidden gluten.

Check what other grains are in the cereal too. You may get an idea of what to eliminate. You know the issues with oats, right? Maybe 10-15% of celiacs react to them as a gluten grain. Roda on the board can't eat anything from Bob's Red Mill because it's all CC'd with gluten-free oats.

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Check what other grains are in the cereal too. You may get an idea of what to eliminate. You know the issues with oats, right? Maybe 10-15% of celiacs react to them as a gluten grain. Roda on the board can't eat anything from Bob's Red Mill because it's all CC'd with gluten-free oats.

Didn't realize I could call out the name of the manufacturer but that's it....Bob's Red Mill. I'll check out the other ingredients. I've been using gluten-free oats for a long time and have not had a problem but today, it really hit me. Thanks for the tip-off.

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Hi USF1970! I hate to hear that you are having a bad time. For the first 10 months of 2010 I had horrible symptoms(diagnosed in 10/2008) up until this time I had improved greatly. I thought I had a problem with my gallbladder, and I do to a point, but it ends up I was reacting terrible to gluten free oat cross contamination. It took over a year to really add up. Once it did, everything bothered me. I was facing taking steroids from my GI. I pretty much refused and decided to do another elimination. With the help of prescription digestive enzymes and the new elimination, I got better in about three months. This was when I started questioning the possiblility of gluten free oat cross contamination. I allready knew I couldn't eat gluten free oats, but I continued eating products that had the CC in not even thinking about it. About 4 months after eliminating all Bob's products(there are others) I decided to try some baked goods at a dedicated gluten free bakery. I knew ahead of time they used flours etc. from BRM. I reacted so bad. That really confirmed it for me. I do have some safe brands that I do fine with, but I have to take that extra step to find out about oat cc. There is a condition called avenin sensitive enteropathy that can cause similar damage to the intestines. There are other things that can to that as well.

Was your scope/biopsy fine before this last one? You've got some good advice already. If I was faced with taking a medication like that, I would probably do all I could first by changing my diet. If in a reasonable amount of time it didn't help I would rethink the situation. You've got a lot to think about. I hope you find relief soon!

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Didn't realize I could call out the name of the manufacturer but that's it....Bob's Red Mill. I'll check out the other ingredients. I've been using gluten-free oats for a long time and have not had a problem but today, it really hit me. Thanks for the tip-off.

I would not assume gluten-free oats are no longer a problem! That's the one grain that is most likely to be causing your problems.

You can mention manufacturers on the board, just stick to your own experiences with them and try not to generalize. :) People forget that food reactions aren't necessarily gluten. "X made me sick" is fine. It helps us troubleshoot, like the oats in the Bob's Red Mill facility. "X made me sick so the food is not gluten-free" is not OK unless you can substantiate your claim.

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I would not assume gluten-free oats are no longer a problem! That's the one grain that is most likely to be causing your problems.

You can mention manufacturers on the board, just stick to your own experiences with them and try not to generalize. :) People forget that food reactions aren't necessarily gluten. "X made me sick" is fine. It helps us troubleshoot, like the oats in the Bob's Red Mill facility. "X made me sick so the food is not gluten-free" is not OK unless you can substantiate your claim.

I agree. Just because I can't tolerate BRM, doesn't mean that others can't. They do a great job with gluten free and I really like their company. It's just unfortunate for me that I can't eat their products. It is NOT a gluten reaction, but MY secondary intolerence.

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Hi USF1970! I hate to hear that you are having a bad time. For the first 10 months of 2010 I had horrible symptoms(diagnosed in 10/2008) up until this time I had improved greatly. I thought I had a problem with my gallbladder, and I do to a point, but it ends up I was reacting terrible to gluten free oat cross contamination. It took over a year to really add up. Once it did, everything bothered me. I was facing taking steroids from my GI. I pretty much refused and decided to do another elimination. With the help of prescription digestive enzymes and the new elimination, I got better in about three months. This was when I started questioning the possiblility of gluten free oat cross contamination. I allready knew I couldn't eat gluten free oats, but I continued eating products that had the CC in not even thinking about it. About 4 months after eliminating all Bob's products(there are others) I decided to try some baked goods at a dedicated gluten free bakery. I knew ahead of time they used flours etc. from BRM. I reacted so bad. That really confirmed it for me. I do have some safe brands that I do fine with, but I have to take that extra step to find out about oat cc. There is a condition called avenin sensitive enteropathy that can cause similar damage to the intestines. There are other things that can to that as well.

Was your scope/biopsy fine before this last one? You've got some good advice already. If I was faced with taking a medication like that, I would probably do all I could first by changing my diet. If in a reasonable amount of time it didn't help I would rethink the situation. You've got a lot to think about. I hope you find relief soon!

Thanks so much; what great suggestions. I've already begun keeping a food journal. Yesterday, the BRM cereal made feel crummy, crummy. Today I had half a bagel and half a HD roll both from Udi's. I've been eating UDI's since I discovered it (about a year ago). I'm wondering if it's those two products. I've had endoscopes every two years since 1998 and this is the first one that's come back bad + losing 40 lbs (which I love) and the sudden onset of osteoporosis (which I don't love). I'll do anything to avoid cyclosporine....it is FAR too toxic (my poor, sweet grandson). I see my doc again in a month so in the meantime I'll keep the food journal and pay more attention to my tummy. Again, thanks so much.

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I agree. Just because I can't tolerate BRM, doesn't mean that others can't. They do a great job with gluten free and I really like their company. It's just unfortunate for me that I can't eat their products. It is NOT a gluten reaction, but MY secondary intolerence.

Thanks for the msg. board tips. I just mentioned Udi's which is new to me. I didn't realize that perhaps I can't tolerate their gluten-free products. Of course that doesn't mean that others can't. One question though....you mention a secondary intolerance. That may indeed be my problem but would that cause my villi to be blunted and flattened? Isn't gluten the only protein that causes that reaction? Just curious.

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Thanks to everyone who has responded to my posts. I've already begun keeping a food journal. Yesterday, the BRM cereal made feel crummy, crummy. Today I had half a bagel and half a HD roll both from Udi's. I've been eating UDI's since I discovered it (about a year ago). I'm wondering if it's those two products. I've had endoscopes every two years since 1998 and this is the first one that's come back bad + losing 40 lbs (which I love) and the sudden onset of osteoporosis (which I don't love). I'll do anything to avoid cyclosporine....it is FAR too toxic (my poor, sweet grandson). I see my doc again in a month so in the meantime I'll keep the food journal and pay more attention to my tummy. Again, thanks so much.

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Thanks for the msg. board tips. I just mentioned Udi's which is new to me. I didn't realize that perhaps I can't tolerate their gluten-free products. Of course that doesn't mean that others can't. One question though....you mention a secondary intolerance. That may indeed be my problem but would that cause my villi to be blunted and flattened? Isn't gluten the only protein that causes that reaction? Just curious.

Oat gluten in 10-15% of celiacs, it's been published in the medical literature repeatedly. Possibly corn gluten and dairy. I've seen a few posters write that their GI doctors said they had seen villous flattening from dairy allergy. We have people on the board who have the reaction they associate with gluten to corn, but I don't know that anyone who is strongly corn intolerant has been back for a repeat biopsy.

Udi's is another great brand that processes gluten-free oats in their facility. I think you may have found the first thing to try. Strict elimination of oats and all oat CC. :)

Maybe Roda will wonder back and share which brands she can tolerate. If not you might private message her.

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Oat gluten in 10-15% of celiacs, it's been published in the medical literature repeatedly. Possibly corn gluten and dairy. I've seen a few posters write that their GI doctors said they had seen villous flattening from dairy allergy. We have people on the board who have the reaction they associate with gluten to corn, but I don't know that anyone who is strongly corn intolerant has been back for a repeat biopsy.

Udi's is another great brand that processes gluten-free oats in their facility. I think you may have found the first thing to try. Strict elimination of oats and all oat CC. :)

Maybe Roda will wonder back and share which brands she can tolerate. If not you might private message her.

Again, thanks so much for this info,......

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Here is a reply I got from Udi's:

I checked with our bakery and was informed:

At this time the oats are only used on our granola side. We use a separate mixer, we use different ovens, and different sheet pans. Of course anything is possible, but it is very unlikely since it is a separate plant within the plant. We do however store them in the same warehouse (unopened) and there is a common wash area.

So there is very little chance for cross contact but not impossible.

Feel free to contact me if you have any further questions and have an Udiful day,

Declan Galvin

Marketing Coordinator

dgalvin@udisfood.com

I seem to do allright with Udi's, but that could change. As soon as I can get up to our local Earth Fare to get some Glutino Genius bread, if it is as good as some here claim, I'm going to switch.

Here are some brands that I tolerate fine:

-Ener G

-Betty Crocker gluten free mixes

-Kinnikinnick

-Schar

-Birkett Mills Pocono Cream of Buckwheat

-Glutino

Also here is a link to a thread I started on it.

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Udi's is another great brand that processes gluten-free oats in their facility.

Thank you for that information. I didn't know that. That explains a lot.

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The food journal has been very helpful. I've eliminated all Udi products (much to my chagrin) and have had no stomach issues until today when I ate a Larabar which I have been eating sporadically once they became available in my hometown. Add those to my list of foods to avoid. Again, I didn't realize I was having stomach 'issues' b/c after all, I am on a strict gluten-free diet but now I'm finding there seems to be several gluten-free items that I'm going to have to avoid. I'll go back to Kinninnick and Glutino unless I find that I'm still not gaining weight.

All of you are absolutely right about the toxic med my doc suggested - I'll eat gravel before I'll take that stuff. I appreciate all of your suggestions. Best, Linda

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    • I have intolerances to a few foods now, so I was wondering about that.. I love cashews though, and a month or two ago I was eating them all the time with no problems at all. I mean, could I really have developed an intolerance to them since then? I don't know if they're made on shared lines (it didn't say on the package so I assumed they weren't), but I'll give them a call. I'm really, really sensitive to cross contamination. Even if something is just made in the same facility (but not on shared lines) it will make me sick. If that's not it, then I'm not really sure
    • Research with KP and find a celiac-savvy GI in your area ( read the biographies). and ask your PCP/GP for a referral to that specific GI (not his buddy).  Ask the GI for the rest  of the celiac panel or proceed with an endoscopy/biopsies -- 4 to six.  Keep eating gluten daily until all testing is complete.  Document and request in writing.  Do not worry about symptoms.  There are over 300 of them and some celiacs have none!   Research all that you can about celiac disease.  The University of Chicago has a great celiac website that has testing Information etc.   Poet me know how it works out.  Hope you feel better soon!  
    • I react to both wheat and barley.  I've opted to just go completely gluten free, for the sake of simplicity and my sanity.  I don't have a diagnosis of celiac disease, but I strongly suspect it.  Unfortunately, I'm not willing to endure the misery of staying on gluten long enough to pursue further testing.  I just know I need to avoid the gluten grains, so I do.  
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