Doctor's Advice Not Helping

[Marie1976]

I was diagnosed with celiac four months ago and have been gluten-free since then. I've been going a bit crazy lately, headaches, PMS, anxiety, depression, stress, feeling like crap in general. I decided I wanted to try acupuncture (I don't want to take medication if I can avoid it), and my insurance covers it if I have a referral.

My regular doc said he couldn't give me a referral and referred me back to my GI doc who will also not give me a referral. Instead he sent me for a blood test to see how I'm doing on the gluten-free diet. He said the test showed improvement but that it was still abnormal. His recommendation is that I should go on a strict gluten-free diet. Hello, that is what I am doing already!

Does this mean that I am accidentally eating gluten? Or is it normal to still show an abnormal test result after 4 months of gluten free?

He said that if the test was normal, then my symptoms are not celiac related and then I would go from there. But just because my test is abnormal, that doesn't necessarily mean my symptoms are related to celiac right? I'm so annoyed by everything right now. I have such a short fuse, yelling at hubby and kids, and then feel like a jerk afterward. Ugh. Anyone have any ideas? I'm taking vitamins. My stress level is just through the roof for some reason. I want to feel better.

[JoshB]

I think anti-gliadin is supposed to drop quickly. Anti-tissue transglutaminase is thought to take much longer to resolve. Four months is not long.

Your symptoms could all be from celiac disease. It tends to mimic other auto-immune diseases and can even provoke those actual disease if left to itself long enough. Celiac patients can have all sorts of raised antibodies, the ones they test your blood for are just the ones most specific to celiac disease.

Right now your doctor wants you to take care of your gluten problem. It's a known and imminent threat, and until it's resolved you'll have symptoms and test markers that could confuse the issue if you're off looking for other problems. I'd bet more than half the people here have celiac disease plus some other horrible symptom that was really what was bothering them in the first place and led to the diagnosis.

I've been gluten free for nine months and most of my issues are still hanging around. I read about the co-morbidities and immediately wanted to test for related conditions that I have symptoms for. It ended up just being a waste of time and money.

[Takala]

You are stressed, they should have given you both the blood test and the acupuncture, Lord, what a bunch of cheapskates.

You are probably getting cross contaminated, as being cranky is one of the symptoms. But acupuncture is safer than something like tylenol. You said you have kids... they are also known as culprits. Is this a mixed household? And what about pets ? Are they in the house, licking, drooling, and walking on things and sleeping on the bed ? Out with the old food, in with the gluten free. (I have a hyper sensitive allergic dog, and I accidentally cc'd him last week with a piece of my multigrain-seed- nut gluten-free toast... grrrrr. But finally got the hot spot to start healing up. The cat used to get him all the time with sharing the water dish, until we changed her food. ) Are you getting the people who are kissing you, to brush their teeth first ?

Are your supplements gluten free ? Are you taking magnesium to balance out the calcium ?

You may also have additional food intolerances, one of the primary culprits is soy for us, so you may want to ditch that and see if it helps. You said that you were vegan on another thread ? That is very difficult to do gluten free. You also may be overloading on simple white carbohydrates and sugar, and then having blood sugar drops and crashing. Try adding a good form of fat to your diet, such as more nuts, avocado, olive oil, and coconut oil and coconut milk. You may also want to consider adding organic, free range eggs. Don't be afraid to eat green vegetables for breakfast - you can put cinnamon on broccoli, if you have to, and you'd be surprised at how that works. And quick stir fried cabbage (like coleslaw mix) actually tastes very sweet. If you are very, very attached to your soy sauce flavor, you can always try coconut aminos sauce, which is a good substitute.

Besides gluten, I will get mild migraines from too much diet soda in cans, but not from that dispensed from soda fountains, so I drink club soda, instead, with a little bit of other soda or juice for flavoring. That is probably the artificial sweetener, as they will use different types. I have also had a reaction recently to one particular brand of lunchmeat which used cornstarch, but I know I'm not a corn reactor, so it is either cc or their particular preservatives. Non - organic dairy sometimes causes some odd pins and needles sensations, so I'm pretty sure I'm hyper sensitive to what ever antibiotic residue they give these poor cows.

Make sure your prep and work surfaces for yourself are clean - paper towels, laid on a plate or on the counter, are your friends.

Also wanted to add that for some of the super - sensitive, they have to make sure their toiletries and cosmetics are gluten free. My spouse got me several times with some old hand lotion by putting it on his hands, and then grabbing ice cubes out of the container in the freezer with them and putting them in my glass. Ugh. I gave up and now just buy all the shampoos, conditioners, whatnot, etc. My theory is, if I can smell it, it is there, somewhere, and I don't want the residues lurking. I have very sensitive skin and eyes, and have had some real funky topical reactions to the weird ingredients you are getting when trying to find something that isn't wheat germ gluten being spread all over your skin or hair - a lot of the vitamin E oils are wheat based, unfortunately, and a lot of the conditioners have wheat or oats. With our hard water, that stuff will never really rinse out, this is where apple cider water vinegar rinse and some coconut oil come in handy.

[Marie1976]

I think anti-gliadin is supposed to drop quickly. Anti-tissue transglutaminase is thought to take much longer to resolve. Four months is not long.

Your symptoms could all be from celiac disease. It tends to mimic other auto-immune diseases and can even provoke those actual disease if left to itself long enough. Celiac patients can have all sorts of raised antibodies, the ones they test your blood for are just the ones most specific to celiac disease.

Right now your doctor wants you to take care of your gluten problem. It's a known and imminent threat, and until it's resolved you'll have symptoms and test markers that could confuse the issue if you're off looking for other problems. I'd bet more than half the people here have celiac disease plus some other horrible symptom that was really what was bothering them in the first place and led to the diagnosis.

I've been gluten free for nine months and most of my issues are still hanging around. I read about the co-morbidities and immediately wanted to test for related conditions that I have symptoms for. It ended up just being a waste of time and money.

You're probably right. I guess I'm just wanting it to NOT be celiac-related. Because that might mean I"m not being careful enough and I swear if I get any more careful I'll be back on the old bananas and rice diet. Grr. Thanks for your response.

[Marie1976]

You are stressed, they should have given you both the blood test and the acupuncture, Lord, what a bunch of cheapskates.

You are probably getting cross contaminated, as being cranky is one of the symptoms. But acupuncture is safer than something like tylenol. You said you have kids... they are also known as culprits. Is this a mixed household? And what about pets ? Are they in the house, licking, drooling, and walking on things and sleeping on the bed ? Out with the old food, in with the gluten free. (I have a hyper sensitive allergic dog, and I accidentally cc'd him last week with a piece of my multigrain-seed- nut gluten-free toast... grrrrr. But finally got the hot spot to start healing up. The cat used to get him all the time with sharing the water dish, until we changed her food. ) Are you getting the people who are kissing you, to brush their teeth first ?

Are your supplements gluten free ? Are you taking magnesium to balance out the calcium ?

You may also have additional food intolerances, one of the primary culprits is soy for us, so you may want to ditch that and see if it helps. You said that you were vegan on another thread ? That is very difficult to do gluten free. You also may be overloading on simple white carbohydrates and sugar, and then having blood sugar drops and crashing. Try adding a good form of fat to your diet, such as more nuts, avocado, olive oil, and coconut oil and coconut milk. You may also want to consider adding organic, free range eggs. Don't be afraid to eat green vegetables for breakfast - you can put cinnamon on broccoli, if you have to, and you'd be surprised at how that works. And quick stir fried cabbage (like coleslaw mix) actually tastes very sweet. If you are very, very attached to your soy sauce flavor, you can always try coconut aminos sauce, which is a good substitute.

Besides gluten, I will get mild migraines from too much diet soda in cans, but not from that dispensed from soda fountains, so I drink club soda, instead, with a little bit of other soda or juice for flavoring. That is probably the artificial sweetener, as they will use different types. I have also had a reaction recently to one particular brand of lunchmeat which used cornstarch, but I know I'm not a corn reactor, so it is either cc or their particular preservatives. Non - organic dairy sometimes causes some odd pins and needles sensations, so I'm pretty sure I'm hyper sensitive to what ever antibiotic residue they give these poor cows.

Make sure your prep and work surfaces for yourself are clean - paper towels, laid on a plate or on the counter, are your friends.

Also wanted to add that for some of the super - sensitive, they have to make sure their toiletries and cosmetics are gluten free. My spouse got me several times with some old hand lotion by putting it on his hands, and then grabbing ice cubes out of the container in the freezer with them and putting them in my glass. Ugh. I gave up and now just buy all the shampoos, conditioners, whatnot, etc. My theory is, if I can smell it, it is there, somewhere, and I don't want the residues lurking. I have very sensitive skin and eyes, and have had some real funky topical reactions to the weird ingredients you are getting when trying to find something that isn't wheat germ gluten being spread all over your skin or hair - a lot of the vitamin E oils are wheat based, unfortunately, and a lot of the conditioners have wheat or oats. With our hard water, that stuff will never really rinse out, this is where apple cider water vinegar rinse and some coconut oil come in handy.

LOL at your comments: "Lord what a bunch of cheapskates" and "licking, drooling and walking on things..." Thanks for the laugh. I am trying to be careful: I ordered special gluten free multivitamins and also magnesium. Also ordered gluten free lipstick. I'll check lotions too. Yes I am vegan, it's been a bit of a challenge. Eating lots of rice-based products. I'm trying to only eat stuff that is made on dedicated equipment now. Making a lot of stir fry veggies with tofu and rice. And hubby bought me my very own gluten-free toaster. Yes, the kids and hubby eat gluten but not as much now because I've been warned about inhaling that pesky Cheerio dust! I don't know about the cat food. I wash my hands after feeding him, is that enough? I'll check his ingredients...

You have a lot of good ideas, thanks! You may be onto something with the blood sugar thing too. I've been eating junk lately (think potato chips and sugary gluten-free cereal) I think because I've been feeling deprived. But I'm starting to put on weight which is also contributing to my crummy mood... Thanks again for your suggestions!

[Fairy Dancer]

You could be getting cross contaminated or being glutened unknowingly. There could also be other food issues. For a while I failed to show as much improvement as I would have liked and later I found that some products I had been eating were not suitable for those on a gluten free diet even though there were no gluten ingredients in the recipe. It was a vegetable stir fry of all things but because of the methods used in manufacture it was not suitable for celiacs.

I also later found that my system does not like fresh corn.

I find its much easier to stick to a whole foods diet and now only buy fresh produce, limiting anything processed to treat foods only (and only after I have triple checked they have no gluten in).

Also because my diet is partially influenced by the paleo diet, other than the occasional bit of rice (once or twice a month), I don't eat any grains or gluten free substitute products (the full paleo diet does not allow any grains, legumes, dairy or processed foods...mostly because according to some grains and legumes contain lectins and anti nutrients and were not consumed by our palaeolithic ancestors). We have only been eating grains as a staple in our diet for 10 thousand years and the theory is that we are not genetically evolved to consume them and that they are harmful to the body. For nearly 200 thousand years before that grains were not a staple food on our menu. We evolved to eat a different type of diet basically. However as I do a modified version of the paleo diet I still consume some dairy and one or two legumes such as green beans and garden peas (they are the only legumes I like anyway).

What if a celiac gene is not an anomally and the human race is still evolving to be able to digest our new diet? Problems with gluten seem to be very common!

I will say that without any grains at all and with limited gluten free processed foods as an occasional treat (ie chocolate ice cream that is gluten free) my symptoms have started to disappear...and fast! For many years I was diagnosed with depression and anxiety. I had mood swings, headaches, migraines, fatigue, dizziness, vertigo, stomach acid, diarrhoea etc and all those are vanishing one by one. So I do feel that your symptoms could be being caused by gluten or grains.

I am also losing weight which is something I, personally, needed to do.

There is a lady I talk to on another site who had problems with metabolic syndrome and type 2 diabetes. Her health problems also vanished on the paleo diet. I have come across a lot of people who, even if they are not diagnosed as celiac, have benefited from going grain/gluten/processed foods free.

Hope you feel better soon.

fairy

[Marie1976]

You could be getting cross contaminated or being glutened unknowingly. There could also be other food issues. For a while I failed to show as much improvement as I would have liked and later I found that some products I had been eating were not suitable for those on a gluten free diet even though there were no gluten ingredients in the recipe. It was a vegetable stir fry of all things but because of the methods used in manufacture it was not suitable for celiacs.

I also later found that my system does not like fresh corn.

I find its much easier to stick to a whole foods diet and now only buy fresh produce, limiting anything processed to treat foods only (and only after I have triple checked they have no gluten in).

Also because my diet is partially influenced by the paleo diet, other than the occasional bit of rice (once or twice a month), I don't eat any grains or gluten free substitute products (the full paleo diet does not allow any grains, legumes, dairy or processed foods...mostly because according to some grains and legumes contain lectins and anti nutrients and were not consumed by our palaeolithic ancestors). We have only been eating grains as a staple in our diet for 10 thousand years and the theory is that we are not genetically evolved to consume them and that they are harmful to the body. For nearly 200 thousand years before that grains were not a staple food on our menu. We evolved to eat a different type of diet basically. However as I do a modified version of the paleo diet I still consume some dairy and one or two legumes such as green beans and garden peas (they are the only legumes I like anyway).

What if a celiac gene is not an anomally and the human race is still evolving to be able to digest our new diet? Problems with gluten seem to be very common!

I will say that without any grains at all and with limited gluten free processed foods as an occasional treat (ie chocolate ice cream that is gluten free) my symptoms have started to disappear...and fast! For many years I was diagnosed with depression and anxiety. I had mood swings, headaches, migraines, fatigue, dizziness, vertigo, stomach acid, diarrhoea etc and all those are vanishing one by one. So I do feel that your symptoms could be being caused by gluten or grains.

I am also losing weight which is something I, personally, needed to do.

There is a lady I talk to on another site who had problems with metabolic syndrome and type 2 diabetes. Her health problems also vanished on the paleo diet. I have come across a lot of people who, even if they are not diagnosed as celiac, have benefited from going grain/gluten/processed foods free.

Hope you feel better soon.

fairy

hi Fairy I responded to your post but it didn't show up for some reason. Grrr. Anyway, thanks for your ideas, I'm going to look into this paleo diet as I am still eating rice and quinoa. I think I need to do more veggies and fruits...

If I have a problem with soy or corn or something, that wouldn't show up as abnormal on my celiac blood test would it? Doesn't the "abnormal" only mean I'm accidentally eating gluten?

[ravenwoodglass]

If I have a problem with soy or corn or something, that wouldn't show up as abnormal on my celiac blood test would it? Doesn't the "abnormal" only mean I'm accidentally eating gluten?

No soy and corn would not show up on a celiac panel. Some folks antibodies can take a while to go down even gluten free. Just continue to be careful and consider whether you might have other intolerances. Soy and dairy are both real common it seems.

The best way to tell, IMHO if you are having issues with other stuff is to eliminate it and see if you feel better. If you still wonder after that add it back in for a week and see if you are feeling bad again.

[T.H.]

Re: your tests - it's totally normal to have test results that are abnormal after just 4 months gluten-free. If you don't have the actual results already, you should see if you can get your original blood test results and the new ones. If your numbers are improving, that's a good sign. If you've had this for years, it can take up to 2 years to get your numbers in the normal range.

If your numbers are the same, that's a concern. And your symptoms continuing...that's a problem, too. Many of us become more sensitive as we go off gluten, so we start reacting to lower levels of gluten cc than we used to. Very annoying, eh?

And just re: the gluten cc. Processed gluten free food usually still contains gluten (typically under 20ppm, but still some, even when made in a gluten-free facility). There are some celiacs that can't tolerate this and react to gluten free processed food. Grain-based foods (like crackers, cereals, etc...), especially, seem more of a problem for a lot of these folks.

My daughter and I both fall into this category, even though my son and other celiacs in my family do not. So cereals like Envirokidz are great for my son, but if my daughter has more than maybe 1/2-1 cup a day then she starts reacting, often with an emotional component (anxiety, exhaustion, and/or massive crabbiness). Dropping the processed foods and going to more whole foods can help you figure out if this is an issue for you.

Another possibility: you mentioned you're eating a lot of rice products made on dedicated equipment - are some of these Lundberg products, by any chance? Some 10-15% of celiacs are also oat sensitive. We react to ANY oats, even gluten-free ones, pretty much like we do to gluten. Some gluten-free companies try to avoid all oat contamination, but that's not required, so some gluten free companies don't. Lundberg, for example, grows gluten-free oats as a cover crop for its rice. Myself (an oat sensitive celiac) and a few other oat sensitive celiacs I know cannot have their rice without getting ill. Possible oat contamination is assumed to be the issue. Most people who are NOT oat sensitive, even fairly gluten sensitive individuals, seem to do just fine with Lundberg rice, otherwise.

And yet another possibility (yes, I can't shut up, LOL). You might be allergic to some of the foods in your gluten-free products. I was very sick when I went gluten free - felt like it was worse than when I WAS eating gluten! One of the issues turned out to be that I have food allergies (tested both by blood tests and with a food journal). I don't get hives, but I feel terrible and exhausted and blech, and it seems to affect me mentally as well. Not in a way that I am crabby because I feel bad, but more like it makes me a different person. I literally wake up ticked off for no reason, and I'm just angry all day, with little to no provocation. Very upsetting.

One of the big allergens was sugar cane for me - most gluten-free food, as you might have noticed, uses evaporated sugar can juice or something similar. This is less processed than normal sugar, so it has much more of the sugar cane allergen than you normally get from fully processed sugar. So you get sick as a dog if you react to this and start eating gluten-free processed foods.

Other foods that are often in gluten-free foods more than in normal foods, that people can react to: corn, potato, tapioca, xanthan gums and other gums (guar, arabic), and eggs.

My GI has told me that if you are reacting to other foods allergically, it'll keep your gut inflamed and will make your healing much slower than normal. However, research on hay fever allergies is much further along than research on mild food allergies, so they can be hard to ferret out. My allergist's opinion is that unless you have extreme allergies, a food journal (recording food and reactions, and time eaten and time reacting) is more useful in finding out what you're reacting to.

Don't know if any of that helps, but maybe something in there you can use!

[Gemini]

LOL at your comments: "Lord what a bunch of cheapskates" and "licking, drooling and walking on things..." Thanks for the laugh. I am trying to be careful: I ordered special gluten free multivitamins and also magnesium. Also ordered gluten free lipstick. I'll check lotions too. Yes I am vegan, it's been a bit of a challenge. Eating lots of rice-based products. I'm trying to only eat stuff that is made on dedicated equipment now. Making a lot of stir fry veggies with tofu and rice. And hubby bought me my very own gluten-free toaster. Yes, the kids and hubby eat gluten but not as much now because I've been warned about inhaling that pesky Cheerio dust! I don't know about the cat food. I wash my hands after feeding him, is that enough? I'll check his ingredients...

You have a lot of good ideas, thanks! You may be onto something with the blood sugar thing too. I've been eating junk lately (think potato chips and sugary gluten-free cereal) I think because I've been feeling deprived. But I'm starting to put on weight which is also contributing to my crummy mood... Thanks again for your suggestions!

Yes, if you wash your hands after feeding the cat, you'll be fine. In fact, if you wash your hands after doing most activities that may center around gluten, you'll be fine. You are new to this diet so it will take a while for your gut to heal and start absorbing properly. Don't assume you are being glutened just because you are having some symptoms. Some of mine took a few years to disappear completely and I always had stellar blood work after diagnosis and treatment. It took me about a year to lower my levels to the awesome range.

One of the biggest components of recovery is PATIENCE! That's the hardest part!

[Marie1976]

thanks everyone, for your helpful responses. definitely will look into all these possibilities.

and by the way: patience?? what's that? LOL!

[livelifelarge24]

I felt great for the first two months Gluten-Free but the last month ive been struggling with stomach issues again & feel hopeless. I never took any of this cross-contamination stuff THAT seriously. Could it really be because I feed the dogs if I forget to wash my hands after? Or kissing my fianc