Should I Do The Finger Poke?

[majortom-thecat]

Hello!

I'm wondering if I should test for celiac. Here's my story:

I'm a 33 year old woman with a tubal ligation. For the last few years, I've had an intermittent painful spot in the right side of my gut. I used to think it was my ovary, but an ultrasound showed no problem there. I've always tried to eat healthy - chicken, dark green vegetables, whole grains... I do avoid red meat. A few months ago I started cooking with lots of vegetables, polenta, quinoa, tofu, yams and sweet potatos, brown rice, and I felt great. I had lots of energy, digestion was going well, and the pain in my gut hadn't bothered me much in a while.

Then I realized that I hadn't made spaghetti in a long time, so I started making it once a week. I realized that on the nights when I made spaghetti, my energy was completely drained and I had brain fog so that I couldn't think of words or think clearly and was cranky. So I knew that I couldn't count on accomplishing anything on spaghetti night. The pain in my gut got worse and became constant. I also developed weird pains and bruises in my legs. I developed a mad craving for onions, and I'd always hated them before. They seemed to sooth the pain, so now I cook an onion in every meal and I stopped making spaghetti.

I went to the doctor because of the gut pain, the leg pains and bruises, and the low energy. I found that I was low in progesterone, thyroid, some vitamins, and I had the lowest iron my doctor had ever seen. My iron level was 7, and it's supposed to be 80. An ultrasound showed a huge hemotoma in my calf, as if it had been torn.

My doctor thinks that all my problems come from the anemia, and that the anemia is from not eating red meat. But I wonder if it was the bread and pasta. I started avoiding gluten, started taking supplements and felt much better. And then someone started giving us fresh bread once a week and I thought maybe I was being silly. I ate a sandwich the other day, and now my gut hurts again. So I'm worried that I'm losing the iron that I've been working to build up.

My doctor offered me a choice of these tests:

finger poke for food allergies

stool test for gluten

elimination diet

an enzyme challenge that would test for HCL in stomach acid

I think I already know that I have an intolerance for gluten, but I'm wondering if I should test for celiac to find out if it's causing the other problems? I never get diarrhea, which sounds like one of the common symptoms. I just want to know if, by eating bread and pasta, am I only making myself uncomfortable or am I harming my health? But I'm hesitant to do the finger poke, because don't you have to eat gluten in order to test for it?

Thanks!

[knittingmonkey]

I think I already know that I have an intolerance for gluten, but I'm wondering if I should test for celiac to find out if it's causing the other problems? I never get diarrhea, which sounds like one of the common symptoms. I just want to know if, by eating bread and pasta, am I only making myself uncomfortable or am I harming my health? But I'm hesitant to do the finger poke, because don't you have to eat gluten in order to test for it?

Thanks!

I'm grateful I had the test for celiac. Knowing how serious my intolerance is (immune system attack on small intestine), and what harm would come if I cheated on the diet (inability to digest nutrients for perhaps weeks) keeps me on the straight and narrow. When I merely suspected I had issues with gluten I probably wouldn't take it quite so seriously. I'd go out to eat more, be less careful about cross contamination...

Nowadays one must be eating gluten in order to test positive for celiac disease, but I understand new tests are being developed for which that won't be necessary.

[majortom-thecat]

When I merely suspected I had issues with gluten I probably wouldn't take it quite so seriously. I'd go out to eat more, be less careful about cross contamination...

Thank you. This makes sense. I'm leaning toward the finger poke so that I can find out about dairy or anything else all at the same time. It would be helpful to have test results in mind at a moment of weakness, or on the other hand to know that I don't need to be so cautious, if that's the case.

The elimination challenge sounds interesting, but I'm making some other changes at the same time including thyroid, probiotic, , progesterone, vitamins, starting to eat red meat... so I think it would be hard to tell. I'm also a pretty psychosomatic person, so I could easily confuse myself

I forgot to mention in my original post that some of my other issues are low blood pressure, cystic breasts, PMS anxiety - which has gotten better since I started taking progesterone, perpetual dark circles under the eyes. When I first started having these symptoms 3 years ago I also had hot flashes and dizzy spells and my menstrual cycle shortened and lightened up. No idea if any of that could be related to gluten. I'm also getting my glucose checked in three weeks.

[RiceGuy]

Seems like you have already done an elimination diet of sorts, and got a fairly definitive answer.

Yes, testing for antibodies would require you to load up on gluten for some weeks (six weeks is the typical time frame suggested) before the results would have a decent chance to be valid. And still the results may not be 100% reliable. However, a "finger poke for food allergies" as you put it, is different from gluten intolerance testing. And gluten intolerance testing is still different from being tested for Celiac.

As for a "stool test for gluten", if you mean for gluten intolerance, then I suppose you're referring to Enterolab testing, or something similar. That would also not tell you if you are Celiac, only if antibodies are being produced. The upside is you wouldn't need to be eating gluten in order to get what are supposed to be somewhat reliable results. The downside is that it doesn't tell you if intestinal damage is being done from gluten.

The only way to know for sure if the small intestine is being damaged by and autoimmune reaction to gluten, is to eat enough gluten for a long enough period of time to intentionally damage the intestine enough for that damage to be picked up by a biopsy. Usually the doctor will first test for the antibodies, because there isn't supposed to be autoimmune damage to the small intestine unless the antibodies are being generated in the first place.

Anyway, even if you don't have Celiac, it doesn't mean that eating gluten doesn't harm your health. The fact that you have pain, iron and other deficiencies, and so forth, does mean it is harming your health. And that puts you at risk for numerous health problems and diseases.

Seems to me, that no matter what tests you get and what results are derived, you really need to be 100% gluten-free to remain healthy. There may of course be other food intolerances or allergies, which a food journal and elimination diet can help you pinpoint.

[WheatChef]

Just as an aside, there's absolutely nothing unhealthy about red meat. Nitrite/Nitrate cured red meats, yes. Regular red meat, not at all. This is one of the top 5 nutritional scams out there thanks to inept media reporting on studies they don't understand. Technically we as humans are built of a nice combination of white and dark meat and so our diet should reflect that.

The only unhealthy thing about red meats is the same thing unhealthy with white meats and that's when they're fed high wheat/corn/soy diets that give them too many omega-6's which they pass on to us.

[majortom-thecat]

Seems like you have already done an elimination diet of sorts, and got a fairly definitive answer.

Yes, testing for antibodies would require you to load up on gluten for some weeks (six weeks is the typical time frame suggested) before the results would have a decent chance to be valid.

Yikes. I don't think I have six weeks to spare for that, because I can't be productive and full of gluten at the same time. I don't usually notice symptoms when I eat a small amount like one cookie so I wonder if I would be ok if I practiced careful moderation. But I guess I'd better be safe than sorry right? Especially when I'm trying to get my health back right now.

[majortom-thecat]

Just as an aside, there's absolutely nothing unhealthy about red meat. Nitrite/Nitrate cured red meats, yes. Regular red meat, not at all. This is one of the top 5 nutritional scams out there thanks to inept media reporting on studies they don't understand. Technically we as humans are built of a nice combination of white and dark meat and so our diet should reflect that.

Thanks for the tip about red meat. I had quit eating it because I thought it was what made me constipated, but now I think that the problem was the bun that came with that hot dog or hamburger - not the meat itself. I've found that eating meat without any bread or pasta doesn't make me constipated. Also, a spoonful of peanut butter without any bread doesn't give me stomach pains the way sandwiches do.

[burdee]

I'm a 33 year old woman with a tubal ligation. For the last few years, I've had an intermittent painful spot in the right side of my gut. I used to think it was my ovary, but an ultrasound showed no problem there. I've always tried to eat healthy - chicken, dark green vegetables, whole grains... I do avoid red meat. A few months ago I started cooking with lots of vegetables, polenta, quinoa, tofu, yams and sweet potatos, brown rice, and I felt great. I had lots of energy, digestion was going well, and the pain in my gut hadn't bothered me much in a while.

My doctor offered me a choice of these tests:

finger poke for food allergies

stool test for gluten

elimination diet

an enzyme challenge that would test for HCL in stomach acid

Above all else, I suggest the stool test for gluten. I did the Enterolab stool test panel (for gluten and casein intolerance, Ttg antibodies, malabsorption and celiac gene) 6 years ago. I've never regretted the money I spent for that test which diagnosed celiac disease and casein allergy/intolerance. Rather than doing a 'finger poke' for food allergies, I'd suggest an ELISA (blood) test for over 100 different commonly eaten foods. If you want to test for stomach acid, the Heidelberg capsule test for stomach acid production actually measures acid in the stomach, not just the esophagus, and is a very reliable test.

SUE

[majortom-thecat]

Above all else, I suggest the stool test for gluten. I did the Enterolab stool test panel (for gluten and casein intolerance, Ttg antibodies, malabsorption and celiac gene) 6 years ago. I've never regretted the money I spent for that test which diagnosed celiac disease and casein allergy/intolerance. Rather than doing a 'finger poke' for food allergies, I'd suggest an ELISA (blood) test for over 100 different commonly eaten foods. If you want to test for stomach acid, the Heidelberg capsule test for stomach acid production actually measures acid in the stomach, not just the esophagus, and is a very reliable test.

SUE

Thanks Sue. My doctor said that the stool test was only for gluten and I didn't know there was a full blood test. I will ask my doctor about these options. Did you have to load up on gluten before you took them?

[majortom-thecat]

Thanks for your input, everyone.

I'm still obsessing over whether I should test/what kind of test to take. And I'm all over the place. I hope it's ok for me to ramble a little bit here

Reasons to test:

What it it's not gluten at all, what if it's Crohn's or diabetes or some other reason I'm not absorbing iron? What if my positive response to gluten-free dieting is all in my head or is from something else? I found a gluten-free department at the grocery store and it has cookies, breads, noodles... but it is more expensive so I don't want to go on the diet unless I need to. I don't want to avoid bread needlessly either, since it's a good source of iron and I could use some of that I guess I should decide whether to test soon, since I ate a sandwich on Thursday - three days ago and I'm feeling symptoms.

A lot of my family members have similar symptoms (brain fog and constipation especially) so if I had a positive test it might encourage them to change their diets too, if they need to. Like knittingmonkey said, I want to find out how serious this is if I can.

Self-Diagnosis

I don't really trust myself with this. I think I'm too suggestible and there are too many other things going on (thyroid levels changing etc. so it might be hard for me to determine what's causing what). But at least I wouldn't have to re-gluten myself.

Symptoms:

• 
  
  
• Extreme fatigue (I used to call it a pasta coma) after eating wheat-heavy meals
  
• Painful spot in lower right gut that persists for days after eating bread or pasta. It seems to respond well to onions.
  
• Constipation, especially after eating wheat-heavy meals. I used to think it was from meat, then dairy but it turns out I can digest those alright as long as there's no bread or pasta.
  
• Stools are usually fluffy, light color, look like floating cork with fuzz and small pieces of undigested food (sorry if that's too graphic). My grandma's are the same and she's 95. When I'm eating less gluten, they're darker, heavier and more solid.
  
• Mysterious bruises on legs. One episode was really bad and they were painful and tingly. I thought it was a blood clot, so my anxiety probably added to the physical sensations.
  
  

But I have a very good immune system. I never catch the colds or flus that go around.

Diagnoses:

Iron level 7. (should be 80)

Low thyroid

Low progesterone

Low blood pressure

My doctor also has me taking B complex and D, but I don't remember if those were tested.

All of the above are new diagnoses. I hadn't been to a doctor in years. My diet up until the doctor visit included lots of brown rice, spinach, tofu, chicken, cheese, brussel sprouts,eggs, lots of vegetables, bananas, and the weekly pasta dish I mention in the original post. I can see how this diet could make for low iron counts, but not that low, right? My menstrual periods are pretty light.

So do you think it's pretty conclusive and I should just take on the diet, or do you think it might be Crohns or diabetes or something else?

Thanks!

[Skylark]

Your doctor can and should rule out Crohn's and diabetes. This can be done while you are on a gluten-free diet. Judging by what you've already said, it sounds like a good part of the problem is gluten.

If you feel like you need the testing for family or because you want to be able to eat gluten occasionally, then eat a bunch of wheat for a month and get it done. To be honest, if you can get the anemia and other health issues cleared up gluten-free you probably shouldn't "cheat" either way. It's not clear whether gluten intolerance is a different thing from celiac or simply an early stage of celiac. In some people, especially those with DQ2.5, it's probably early celiac.

[majortom-thecat]

Your doctor can and should rule out Crohn's and diabetes. This can be done while you are on a gluten-free diet. Judging by what you've already said, it sounds like a good part of the problem is gluten.

If you feel like you need the testing for family or because you want to be able to eat gluten occasionally, then eat a bunch of wheat for a month and get it done. To be honest, if you can get the anemia and other health issues cleared up gluten-free you probably shouldn't "cheat" either way. It's not clear whether gluten intolerance is a different thing from celiac or simply an early stage of celiac. In some people, especially those with DQ2.5, it's probably early celiac.

Thanks Skylark. I wonder how much wheat I would have to eat, or does having symptoms right now mean that there is probably enough gluten in my system for the antibodies to show up on a test? Or if I need more gluten in my system, I should probably do that before restoring my iron so that my efforts don't all go to waste. Or! I wonder if I could talk my mom into testing instead, since she has almost all the same symptoms I do...

[Skylark]

What I've read is 4 slices of bread worth a day for a month. From your description you risk making yourself really sick doing that.

Someone mentioned Enterolab. You'll almost certainly come up "gluten sensitive", which you already know. The so-called "celiac" stool tests at Enterolab are not specific for celiac and you don't even know your chance of a false negative there because it's not provided. Genetic tests are merely interesting, not diagnostic.

[majortom-thecat]

What I've read is 4 slices of bread worth a day for a month. From your description you risk making yourself really sick doing that.

Someone mentioned Enterolab. You'll almost certainly come up "gluten sensitive", which you already know. The so-called "celiac" stool tests at Enterolab are not specific for celiac and you don't even know your chance of a false negative there because it's not provided. Genetic tests are merely interesting, not diagnostic.

Thanks! This definitely clears up some of my confusion. I'm going to ask my doctor about other possible causes of iron deficiency and stick to gluten-free until my iron level is normal, which should take about 10 months at the rate I'm going. If other probable causes are ruled out and if things are looking up, I'll assume that I have my answer. If I'm still in bad shape after being gluten-free for that long, I'll investigate other possible reasons for iron deficiency and gut pain. This way I should be able to figure it out without cheating