Dismissed By Doctor

[megsylvan2]

Well, I do believe that I've been dismissed by my doctor now that the results from the latest round of tests has come in. She tested for Celiac via blood, and h pylori via stool, all of which came back negative. She's already done ultra sound, upper endoscopy (although took no samples from small bowel), and CT scan. The only other thing she wants to do is colonoscopy and that will be due in October. She said I show no sign of cancer. And all my allergy tests came back negative. Neither of us expected the bloodwork to come back positive since I'd been gluten and allergen free for about 2 months prior to testing.

To recap my symptoms (the short list, that is) have been intense intestinal pain, major inflammation and bloating, lots of intestinal noises and gas, tenderness, memory and thinking problems, and this funny kind of sickening naseousness that feels like a sick liver (if anyone's ever had hepatitis - it's kind of like that). I sometimes get mild D, but feel that is mostly from dairy, or eating my 'poison foods'. All of this goes away if I eat nothing but meat, fruit, and vegetables, but I never seem to stay fine for more than a couple of days, probably because I keep testing to see if I for sure get a reaction and if I can definitively isolate it to these specific foods.

I believe I have an intolerance to the following foods: wheat, egg, honey and gluten. Egg really hurts - causes a lot of pain, and egg and all the rest cause all symptoms above, and burn going down and all the way through. I am sure about egg, and was sure about wheat, but will test it one more time. I was pretty sure about gluten, but I wonder now if it was because there was egg in almost all the gluten foods I consumed. So I'll have to test it again now, though I'm sure I did already. (Right now I can't find the food diary that I was keeping for awhile.)

My doctor basically said if those foods bother me, would it be a problem to just not eat them. But other than that, she didn't know what else to tell me. When I asked again about Celiac she said she doesn't see much point in doing endoscopy for celiac since only 5 percent of people with negative blood work ever show positive on endoscopy. BUt that if I wanted to pursue that, she referred me to Dr. Ruddert, who is the Celiac authority in town, and in the southeast. Other than that, take care and call her if I had any questions or if she could do anything for me.

So, I guess I'll go do my last 2 little food elimination tests. Or more accurately, re-do them, as I'm sure I've done them before. But I like to be 100 percent positive beyond the shadow of a doubt. If I feel like it later, I might go see Dr. Rudert, or do Enterolab. And maybe join a local support group. Other than that, I guess I've just joined the ranks of the undiagnosed.

I guess it could be worse, as I don't have the major, major issues that some here have. But I know that my biggest danger will be my own self-doubt. Without a diagnosis, I think I will continually question whether I really have a problem or not and I will probably constantly test this until something happens and I finally come to grips with the fact that I do have a problem and it is real and it means I cannot eat those foods. Cause I can tell you, I can read all the admonitions on this board till I am blue in the face because I know that I just haven't accepted that yet. I can tell you - I think I'm going to be one of those - I need a diagnosis kinds.

Does anyone know of any foods I can test with that have gluten but no egg (short of eating plain flour, that is)?

It just bothers me that, with as much knowledge as there is about Celiac here on this board by non-medical personnel, it would seem to me that doctors would know enough to monitor people with Celiac, (or those at risk of developing Celiac) for secondary illnesses (osteoporosis, memory problems, intestinal cancers, secondary auto-immune disorders, diabetes, etc.) and provide support in terms of counseling, advisement, and dietary and nutritional counseling, not just escort their patients to the door with a wave of the hand and a wish of good luck!

Quite disappointing.

[Guest nini]

Dr. Rudert is very knowledgeable, however, I don't believe that she bills insurance, so it is quite pricey to see her out of pocket...

If you are already gluten-free, she won't be able to do much of anything for you, as she never puts patients back on gluten for testing if they've shown positive response to the diet.

However, since you seem to be concerned that this is the result of several food intolerances, look into the elimination diet and then go from there. If you are looking to test gluten/wheat without egg, I believe that most pasta is just durum or semolina wheat and water... I know there are some egg free noodles that have wheat/gluten in them.

Trust what your body is telling you.

I take it you are in the ATL area? Whereabouts? I'm in Marietta

[Claire]

You could always make cookies or something with regular flour and substitute for the eggs. There are many substitues. Here are some:

2 eggs - Use 1/2  cup soft silken tofu.

Ener-G Egg Replacer - follow directions on box.

2 Tbsp corn starch = 1 egg

2 Tbsp arrowroot flour = 1 egg

2 Tbsp potato starch = 1 egg

1 heaping Tbsp soy powder + 2 Tbsp water = 1 egg

1 Tbsp soy milk powder + 1 Tbsp cornstarch + 2 Tbsps water = 1 egg.

1 Tbsp flax seeds + 1 cup water = 1 egg. Blend seeds and water for 1 to 2 minutes

until desired consistency.

1 banana = 1 egg in cakes.

[paulasimone]

I'd agree with Nini. Dr. Rudert is extremely nice, but expensive and doesn't file insurance (I think the first visit is $250, then $100some each after that, PLUS labs). And if you're already on the diet, testing's likely to dud.

I would suggest instead seeing an allergist specialist to help you diagnose your other sensitivities. There are some skin/blood tests they can do that, even if they don't conclusively diagnose food allergies, can point to them, or point to ruling out others. (It was an allergist that told me I might have "wheat sensitivity" - it was the diet (a year later, when I finally came around), that diagnosed me for certain - DEFINITELY CELIAC.)

Plus, a good allergist will have info on good, methodical ways to go about elimination diets, if you don't already have that info. There's very specific steps and certain orders to go about these things so that you can tell exactly what it is you're reacting to. I'd imagine this would be important since some people seem to have "sleeper" reactions that don't kick in immediately.

I don't know an allergist in Atlanta, though - mine's in NC.

Oh, re: your diet test: I didn't start getting immediate reactions to gluten until I was on the diet for a good long while (THAT sure changed though!!! ) so don't expect to instantly get conclusive symptoms when you bite into one cookie (though this might be true for some people). It sounds to me like you've already done this test anyway - bad symptoms go away on the diet, right?

good luck! if you end up diagnosing yourself conclusively with the diet, you'll be in good company here!

paula

[MattUK]

Sorry to hear of your problems. I am in a similar position here in the UK where nobody seems to understand celiac disease. I have just had my first celiac disease screening blood test which came back negative. The Doctor said 'So you dont have it'. I said 'Well i hadnt been eating wheat for a month before hand and sometimes the tests are unreliable anyway' and he kept repeating 'the test is negative' in a smug way and eventually said 'Have you ever thought about seeing a counsellor?'. This is unbelievable especially considering another GP had told me that they had tested me for everything else before they even considered this. Its shameful.

[Nancym]

You're probably wasting your time with another endoscopy if you're already off the gluten. Why not just get a diagnosis from Enterolab.com? They can test you for other sensitivities too.

[ravenwoodglass]

Well, I do believe that I've been dismissed by my doctor now that the results from the latest round of tests has come in. She tested for Celiac via blood, and h pylori via stool, all of which came back negative. She's already done ultra sound, upper endoscopy (although took no samples from small bowel), and CT scan. The only other thing she wants to do is colonoscopy and that will be due in October. She said I show no sign of cancer. And all my allergy tests came back negative. Neither of us expected the bloodwork to come back positive since I'd been gluten and allergen free for about 2 months prior to testing.

To recap my symptoms (the short list, that is) have been intense intestinal pain, major inflammation and bloating, lots of intestinal noises and gas, tenderness, memory and thinking problems, and this funny kind of sickening naseousness that feels like a sick liver (if anyone's ever had hepatitis - it's kind of like that). I sometimes get mild D, but feel that is mostly from dairy, or eating my 'poison foods'. All of this goes away if I eat nothing but meat, fruit, and vegetables, but I never seem to stay fine for more than a couple of days, probably because I keep testing to see if I for sure get a reaction and if I can definitively isolate it to these specific foods.

I believe I have an intolerance to the following foods: wheat, egg, honey and gluten. Egg really hurts - causes a lot of pain, and egg and all the rest cause all symptoms above, and burn going down and all the way through. I am sure about egg, and was sure about wheat, but will test it one more time. I was pretty sure about gluten, but I wonder now if it was because there was egg in almost all the gluten foods I consumed. So I'll have to test it again now, though I'm sure I did already. (Right now I can't find the food diary that I was keeping for awhile.)

My doctor basically said if those foods bother me, would it be a problem to just not eat them. But other than that, she didn't know what else to tell me. When I asked again about Celiac she said she doesn't see much point in doing endoscopy for celiac since only 5 percent of people with negative blood work ever show positive on endoscopy. BUt that if I wanted to pursue that, she referred me to Dr. Ruddert, who is the Celiac authority in town, and in the southeast. Other than that, take care and call her if I had any questions or if she could do anything for me.

So, I guess I'll go do my last 2 little food elimination tests. Or more accurately, re-do them, as I'm sure I've done them before. But I like to be 100 percent positive beyond the shadow of a doubt. If I feel like it later, I might go see Dr. Rudert, or do Enterolab. And maybe join a local support group. Other than that, I guess I've just joined the ranks of the undiagnosed.

I guess it could be worse, as I don't have the major, major issues that some here have. But I know that my biggest danger will be my own self-doubt. Without a diagnosis, I think I will continually question whether I really have a problem or not and I will probably constantly test this until something happens and I finally come to grips with the fact that I do have a problem and it is real and it means I cannot eat those foods. Cause I can tell you, I can read all the admonitions on this board till I am blue in the face because I know that I just haven't accepted that yet. I can tell you - I think I'm going to be one of those - I need a diagnosis kinds.

Does anyone know of any foods I can test with that have gluten but no egg (short of eating plain flour, that is)?

It just bothers me that, with as much knowledge as there is about Celiac here on this board by non-medical personnel, it would seem to me that doctors would know enough to monitor people with Celiac, (or those at risk of developing Celiac) for secondary illnesses (osteoporosis, memory problems, intestinal cancers, secondary auto-immune disorders, diabetes, etc.) and provide support in terms of counseling, advisement, and dietary and nutritional counseling, not just escort their patients to the door with a wave of the hand and a wish of good luck!

Quite disappointing.

Your best bet to test just gluten would be something like wheat baby cereal or creamof wheat, perhaps triscuts, try for as pure as you can, no yeast etc for trial. I used triscuts.

[Magnoliamars]

Your best bet to test just gluten would be something like wheat baby cereal or creamof wheat, perhaps triscuts, try for as pure as you can, no yeast etc for trial. I used triscuts.

I had symptoms for over 17 years and saw many doctors; the first diagnosis was Fibromyalgia and IBS. So for years I suffered severe joint and muscle pain, as well as the usual gastric symptoms associated with Celiac Disease. I took muscle relaxants and anti-inflammatory meds, and would not leave home without some Pepto Bismol in my car, or tablets in my purse. I went through phases when I would have severe joint and muscle pain, I would feel feverish and slightly nauseated, and could not sleep. I finally got into see a very good rheumatologist after waiting almost 6 months for the appointment, by this point I was loosing about a pound per day, and getting very,very sick. After spending less than an hour with this doctor she looked at me and told me that she thought I had Celiac Disease, they drew blood that day and set up an appointment with a gastroenterologist. Within two days they called to inform me that the blood test her lab did, showed my vitimin B levels were dangerously low, they had me start giving myself injections of vitimin B , 1000mgs twice per week for six months. My other lab work came back and I was almost off the chart positive on two of the antigliadins, and moderately positive on the third antigliadin. When they did my endoscopy and colonoscopy, they found three areas of what looked like severe irritation, but no damage to the villi. It was just a matter of time before there would have been damage. So many times I got so frustrated , angry, and confused with the doctors I had been seeing, I was getting sicker, and sicker, and they basically made me feel like I was a hypochodriac. At times I would get very depressed, but I just kept searching for a doctor who would listen to me and make an effort to figure out what was wrong, thank God I finally found the right person. I have been on the diet now for two years, gastric symptoms are better,but still hit me at times, I still suffer almost daily from the joint and muscle pain, and I think I have started having neuropathy in my left leg and foot. This is most likely due to the very low levels of vitimin B , for a sustained period of time. Having said all of that , I am BETTER, and I am so thankful to be BETTER. While it can be very discouraging to go to doctor after doctor, and be told that there is nothing wrong, DON'T GIVE UP! There is someone who will listen to you, keep trying.

Your best bet to test just gluten would be something like wheat baby cereal or creamof wheat, perhaps triscuts, try for as pure as you can, no yeast etc for trial. I used triscuts.

I had symptoms for over 17 years and saw many doctors; the first diagnosis was Fibromyalgia and IBS. So for years I suffered severe joint and muscle pain, as well as the usual gastric symptoms associated with Celiac Disease. I took muscle relaxants and anti-inflammatory meds, and would not leave home without some Pepto Bismol in my car, or tablets in my purse. I went through phases when I would have severe joint and muscle pain, I would feel feverish and slightly nauseated, and could not sleep. I finally got into see a very good rheumatologist after waiting almost 6 months for the appointment, by this point I was loosing about a pound per day, and getting very,very sick. After spending less than an hour with this doctor she looked at me and told me that she thought I had Celiac Disease, they drew blood that day and set up an appointment with a gastroenterologist. Within two days they called to inform me that the blood test her lab did, showed my vitimin B levels were dangerously low, they had me start giving myself injections of vitimin B , 1000mgs twice per week for six months. My other lab work came back and I was almost off the chart positive on two of the antigliadins, and moderately positive on the third antigliadin. When they did my endoscopy and colonoscopy, they found three areas of what looked like severe irritation, but no damage to the villi. It was just a matter of time before there would have been damage. So many times I got so frustrated , angry, and confused with the doctors I had been seeing, I was getting sicker, and sicker, and they basically made me feel like I was a hypochodriac. At times I would get very depressed, but I just kept searching for a doctor who would listen to me and make an effort to figure out what was wrong, thank God I finally found the right person. I have been on the diet now for two years, gastric symptoms are better,but still hit me at times, I still suffer almost daily from the joint and muscle pain, and I think I have started having neuropathy in my left leg and foot. This is most likely due to the very low levels of vitimin B , for a sustained period of time. Having said all of that , I am BETTER, and I am so thankful to be BETTER. While it can be very discouraging to go to doctor after doctor, and be told that there is nothing wrong, DON'T GIVE UP! There is someone who will listen to you, keep trying.

[megsylvan2]

Dr. Rudert is very knowledgeable, however, I don't believe that she bills insurance, so it is quite pricey to see her out of pocket...

If you are already gluten-free, she won't be able to do much of anything for you, as she never puts patients back on gluten for testing if they've shown positive response to the diet.

However, since you seem to be concerned that this is the result of several food intolerances, look into the elimination diet and then go from there. If you are looking to test gluten/wheat without egg, I believe that most pasta is just durum or semolina wheat and water... I know there are some egg free noodles that have wheat/gluten in them.

Trust what your body is telling you.

I take it you are in the ATL area? Whereabouts? I'm in Marietta

Hi Nisla. I did speak to Dr. Rudert's office and got all the pricing particulars. I'm not sure I'm ready to do that at this time. Basically, right now I'm just confused and floundering. I was so mad yesterday, I ate a chicken pot pie, crust and all. Didn't actually feel too bad, intestinally - nothing that Tums didn't mostly handle, and just my now normal amount of soreness that I'm so used to that I discount it. But boy was I tired and had major brain fog all day. I'll run my little experiments once more. I have been able to run pretty decent elimination diets on my own, which is how I came up with these foods in the first place, but it was not always done truly the right way. I've read how to do it, and it is hard to keep up with it. I'll tell you, I am just so sick of messing with diets and paying so much attention to foods!!!!!!

I know that "Trust what your body is telling you" is the truth that I should follow, but I'm just not quite there yet. I feel that I have to be very precise with the elimination diet and know what each food causes before I can let it go and accept it. I'll be good on the diet and after a week or so of being very good, I'll start to feel normal again, then I'll start to think that it was all in my head, and start testing foods again to be sure I didn't dream it. I did keep a food diary for about a month. Since my memory seems to be gone now (either from gluten or aging or premature alzheimers, I need to get that food diary out and type it up and post it on the refrigerator to remind myself. Maybe that way I won't feel compelled to keep repeating the same experiments!

You could always make cookies or something with regular flour and substitute for the eggs. There are many substitues.

Wow, Claire, thanks for the egg substitute info. It's really hard to do without eggs, and the ener-g egg replacer only makes a good substitute in some things.

Very helpful. Thanks!

[megsylvan2]

I would suggest instead seeing an allergist specialist to help you diagnose your other sensitivities. There are some skin/blood tests they can do that, even if they don't conclusively diagnose food allergies, can point to them, or point to ruling out others. (It was an allergist that told me I might have "wheat sensitivity" - it was the diet (a year later, when I finally came around), that diagnosed me for certain - DEFINITELY CELIAC.)

Plus, a good allergist will have info on good, methodical ways to go about elimination diets, if you don't already have that info. There's very specific steps and certain orders to go about these things so that you can tell exactly what it is you're reacting to. I'd imagine this would be important since some people seem to have "sleeper" reactions that don't kick in immediately.

Thanks Paula,

I did see an allergist and was tested for 80 foods, including immunocaps. All were negative. As soon as they got the negative results, I was dismissed from there too. They wanted nothing further to do with me. Didn't give me any recommendations for food intolerances or anything. In their eyes, if it was not an IgE allergy, it was not a true allergy and they did not want to deal with it.

My holistic doctor did say there were other tests I could have, but she was not a specialist in this. How in the world do you go about finding an allergist who is willing to deal with food sensitivities and willing to monitor an elimination diet? I guess I could call around and ask... Right now I'm sick of going to doctors and have other things I need to attend to first. But maybe in a month or so...

Sorry to hear of your problems. I am in a similar position here in the UK where nobody seems to understand celiac disease. I have just had my first celiac disease screening blood test which came back negative. The Doctor said 'So you dont have it'. I said 'Well i hadnt been eating wheat for a month before hand and sometimes the tests are unreliable anyway' and he kept repeating 'the test is negative' in a smug way and eventually said 'Have you ever thought about seeing a counsellor?'. This is unbelievable especially considering another GP had told me that they had tested me for everything else before they even considered this. Its shameful.

Yes! This is what irks me so much, and it seems like almost everybody else on this board - the attitude of the doctors, as if we are making this stuff up. And the ignorance! For someone whose specialty is gastroenterology, you would think they would be well informed on the subject. You are right. It is shameful.

You're probably wasting your time with another endoscopy if you're already off the gluten. Why not just get a diagnosis from Enterolab.com? They can test you for other sensitivities too.

I agree. I wouldn't do an endoscopy at this point. Enterolab seems to be the next logical choice. I'm not sure if my doctors would accept the results from that, but it would probably me the most reassuring thing for me after I do my 2 little diet tests on my own.

Your best bet to test just gluten would be something like wheat baby cereal or creamof wheat, perhaps triscuts, try for as pure as you can, no yeast etc for trial. I used triscuts.

Triscuits!! Oh, I failed the Triscuits test miserably. Two Triscuits burned everything inside from my lips and tongue all the way down, and caused MAJOR distress. That is what tipped me off to the wheat and got me started down this whole path! I've stayed away from them and wheat big-time ever since. Although in my latest round of self-doubt, I was going to do them once more to be certain. (Though I don't think I really need to, but that way I could be positive.)

[megsylvan2]

I had symptoms for over 17 years and saw many doctors; the first diagnosis was Fibromyalgia and IBS.

... <<SNIP> ...

Having said all of that , I am BETTER, and I am so thankful to be BETTER. While it can be very discouraging to go to doctor after doctor, and be told that there is nothing wrong, DON'T GIVE UP! There is someone who will listen to you, keep trying.

Magnoliamars - I'm so sorry for you for all you went through. I cannot imagine what that must have been like, and how discouraging it must have been. I keep telling myself to get over it because my issues are nowhere as severe as what some others here have gone through. But I guess the point for me is that I want to keep from going there. I'm trying to avoid GI or colon cancer like my mom and grandfather, and I'm very concerned about my memory.

And then when I look at what I can't eat, I think -- this is serious, and one of my doctors should be paying attention to this and taking it seriously. It's not right to not be able to eat half the foods in our diet. It's not right to not be able to take the medications I need (Lipitor and Synthroid) because they now cause me pain. And it's not right to not be able to take vitamins to compensate. And I shouldn't be left on my own to figure this out by myself. One of my doctors should be doing this!!!

And then I don't know what to do next, so I start double checking the foods again to prove that they are a problem for me. I guess in the back of my mind I am thinking that I will prove it to myself beyond the shadow of a doubt and then take it to them as proof. But the problem is - who do I take it to? All my other doctors (endocrinologist and internist) would send me to the gastroenterologist, and she's the one who said there was nothing she could do and I should just not eat those foods.

Now that is true, and she is right. But I guess I expected someone to help me with the elimination diet and help me discover any food sensitivities or intolerances I might have. And I especially expected help with finding alternatives for the Lipitor and Synthroid and a vitamin regimen!

So I will run my 2 little final food tests, print out my results and post them on the refrigerator so I don't forget what I have done and be tempted to try it again, and then be done with it. Accept that I cannot eat these foods. Stay away from them and be gluten free. Stop stressing about it, and get on with the rest of my life. Maybe research myself on substitutes for the Lipitor and Synthroid and vitamins. And just keep coming to these boards for support. I feel bad for having done all this posting about me, me, me. BUt I guess that is why we all come here -- because we just need someone to listen for awhile.

So thanks, everyone!

[megsylvan2]

Just thought I'd report back in that I finished my elimination diet tests. Definitely problems with wheat and gluten. (A full plate of spaghetti and a slice of garlic bread just about did me in!) Took me a week to get over it. And egg - forgot there was egg in Caesar salad dressing tonight, so I feel pretty lousy right now.

Maybe now I'll remember. NO wheat, NO gluten, NO egg, and NO honey and NO dairy without Lactaid.

And, I'm trying another doctor. Have to try the testing first through insurance. If not, then Enterolab, here I come!

[marciab]

Just wanted to add that I was confused too when my GP gave me the instructions for the elimation diet and set me free. She had me give up all kinds of foods, including meat, because my stomach was killing me 24/7.

I called my GP a couple of weeks into the diet and complained of feeling weak, but they didn't seem interested. Now, I know I was obvioulsy going through withdrawals, but at the time I didn't know what to think.

To make a long story short, now that I'm gluten free + food allergen free and no longer having digestive issues, they believe me.

IMO, I think doctors today are seeing so many patients who go on the internet, learn a little about an illness and then want a doctor to check them for it. Eventually, the medical profession will see that this is a good thing, because they sure aren't diagnosing Celiac as often as they should.

good luck ... Marcia

[CMCM]

Looking back, before I suspected gluten as a problem, I would go thru periods where I almost didn't want to eat because it seemed like every food in the universe bothered me or made me sick. What I think now is that my system was in such a turmoil from the gluten and casein I was eating, this affected my ability to digest everything else.

Like you, I noticed once about 3 years ago that when I did the Atkins diet (lots of lean meat, moderate veggies...and of course no grains or starches at all, and not even any fruit in the intial phase). I had read all these negative things about Atkins, and in fact, one of the things I thought I couldn't handle was any kind of fat. Yet on Atkins, I suddenly felt FABULOUS....I hadn't felt that good in years and years. But I didn't really put two and two together at that time.

Looking back, I now see that it was the lack of grains and starches and sugar that helped me. When I first started the gluten/casein free diet a couple of months ago, I was a bit better but still had problems. I was sure it was soy, perhaps egg, so I got an additional test for those, but they were negative. I then realized that it was all the gluten free products I was eating to compensate...which contained sugar (lots), and starches and a bunch of other flour types. When I decided to do Atkins again recently, all those things were cut out and I'm back to lean meats (and occasional bacon), lots of eggs, small amount of cheddar cheese, and 3 cups of green veggies daily...plus lots of water. I FEEL GREAT! All my negative symptoms went POOF and disappeared. So it looks to me like my body cannot (at least at this time) not only not handle gluten, but sugar and starches are a no-no as well. Sometimes I think you have to do a fairly limited diet (such as Atkins) and let your body calm down, and then see how you do with various things as you add them back in later one at a time.

As time passes, I am coming to value feeling good and normal over eating bad stuff. Just an occasional goodie of some sort, not every day. My system can handle that.

The Enterolab tests are a good thing, and not really expensive. They will tell you a lot and give you an idea of what to do next.

And if you do end up to have the celiac or gluten genes, and test with antibodies, I really do advise a simple gluten free (and possibly casein free diet as well, depending on how your casein test turns out) diet for a time WITHOUT getting into all the gluten free products, which seem to be hard on a lot of us. Try them later, in moderation.