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AConSmith

Panicky About My Son's Illnesses

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I can hardly stand this anymore with my 24 yo son in Boston in agonizing joint pains, chronic diarrhea, stomach pains, unable to sleep, losing weight every day and already too thin, depressed, confused, shaking, feeling faint, etc. Now, he is barely able to work. He just called tonight wondering if he should go to an ER at Beth Israel hospital and I don't know what to say. We have been trying, trying, trying to get an appt asap at either Columbia Medical Ctr - Dr. Green's group in Ny with Dr. Tennyson (takes his insurance) or Dr. Leffler who works with Dr. Kelly at Beth Israel in Boston. The soonest appt now is Aug 21st with Leffler, no appt yet with NY. He calls each day hoping for a cancelation but no dice. He had a colonoscopy and endoscopy and biopsy last week with a totally unknowing GI in Boston who immediately denied GD before even doing testing. Nothing showed in tests. My son says that he cannot go on this way and wants to go into a hospital tonight. If he does though, what will happen? No one will know how to treat or what to treat for and it will be nightmare on top of nightmare. Any suggestions? Please answer me with whatever you can suggest. I am in NC and it is torture knowing the pain and misery my son is in, so far away. Thanks Ann

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It sounds so scary for you.

Has he tried doing an elimination diet to see if any of his pains go away when he cuts out different foods?

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It sounds so scary for you.

Has he tried doing an elimination diet to see if any of his pains go away when he cuts out different foods?

When he did go on what he felt was a gluten free diet... he did not notice a difference in those two weeks, BUT, when he was told to eat wheat again before testing, he sure did seem worse! Thanks ann

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If your son has already gone through all his testing, there is no reason for him to keep eating gluten. Do you think he'll have to test all over again? I would have had him go gluten-free the day of the endoscopy and never look back. He's had all the tests the dr's are going to run so he can go gluten-free immediately. The dietary response he felt before was his body telling him he needs to eat gluten-free. Why does it matter what any dr says? If his health improved, that is what he should do. Even if he chooses to have genetic testing, he doesn't need to eat gluten for that. Get him off the poison!

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Do you think he would accept testing from Enterolab.com? It doesn't diagnose celiac disease but they can tell you if you're sensitive to gluten or casein (soy too, if you order the test). That's the testing I did. Took about 2 weeks to get the results.

http://enterolab.com

I'm sorry your son is doing so poorly. I hope he gets it figured out very soon!

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I can hardly stand this anymore with my 24 yo son in Boston in agonizing joint pains, chronic diarrhea, stomach pains, unable to sleep, losing weight every day and already too thin, depressed, confused, shaking, feeling faint, etc. Now, he is barely able to work. He just called tonight wondering if he should go to an ER at Beth Israel hospital and I don't know what to say. We have been trying, trying, trying to get an appt asap at either Columbia Medical Ctr - Dr. Green's group in Ny with Dr. Tennyson (takes his insurance) or Dr. Leffler who works with Dr. Kelly at Beth Israel in Boston. The soonest appt now is Aug 21st with Leffler, no appt yet with NY. He calls each day hoping for a cancelation but no dice. He had a colonoscopy and endoscopy and biopsy last week with a totally unknowing GI in Boston who immediately denied GD before even doing testing. Nothing showed in tests. My son says that he cannot go on this way and wants to go into a hospital tonight. If he does though, what will happen? No one will know how to treat or what to treat for and it will be nightmare on top of nightmare. Any suggestions? Please answer me with whatever you can suggest. I am in NC and it is torture knowing the pain and misery my son is in, so far away. Thanks Ann

If he is that sick, he should be seen. Something is wrong, whether celiac disease, gluten intolerance or something else. He should explain to the ER that he suspects possible celiac disease (if he suspects that). Yes, it will be a lot of waiting around (bring a book), and you may or may not get the right doctor, it will be a crap shoot as far as if they will help him or not.

To the insurance issue: he should be able to get health insurance where he doesn't have to travel to NY to see a doctor. MA has a really good health insurance law as far as based on ability to pay. Have him try Health Care for All, 617-350-7279. or www.hcfma.org This will take a couple of months for the processing and all that but he would have access to local doctors.

You said something about "what he thought was a gluten-free diet", if he's not sure, then he probably was not completely gluten free.... Did he do this diet right before his tests? If you are not ingesting gluten (or only very small amounts) for about 3 months before testing, it can skew both blood test and biopsy results.

I hope your son feels better soon.

R

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If he is that sick, he should be seen. Something is wrong, whether celiac disease, gluten intolerance or something else. He should explain to the ER that he suspects possible celiac disease (if he suspects that). Yes, it will be a lot of waiting around (bring a book), and you may or may not get the right doctor, it will be a crap shoot as far as if they will help him or not.

To the insurance issue: he should be able to get health insurance where he doesn't have to travel to NY to see a doctor. MA has a really good health insurance law as far as based on ability to pay. Have him try Health Care for All, 617-350-7279. or www.hcfma.org This will take a couple of months for the processing and all that but he would have access to local doctors.

You said something about "what he thought was a gluten-free diet", if he's not sure, then he probably was not completely gluten free.... Did he do this diet right before his tests? If you are not ingesting gluten (or only very small amounts) for about 3 months before testing, it can skew both blood test and biopsy results.

I hope your son feels better soon.

R

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So my son Peter went to see this new Boston, GP who came highly recommended. He felt that having a GP for most of the referrals would be helpful and since he feels he really needs to be hospitalized, he would then have an "official" doctor. This was worse than ever -- this guy basically said that Lyme and Celiac are not recognized by the medical community nor by him and that Peter should just go on antidepressants cause he is fine -- having had a normal looking colonoscopy and endoscopy. Peter responded with, "I cannot believe you are saying this. I have lost 20 lbs in two months, am in chronic pain in muscles, joints, and stomach, headaches all the time, diarrhea all the time, fearing losing my job cause I can no longer even work and am only 24 years old and you are telling me I am fine and need antidepressants??!!" It is all like a really bad movie. The jerk doc took more blood, God only knows for what and dismissed my dear, sick son who at that point, began to fall apart and asked the doc to just "call my mother." He will call tomorrow, but really what is there to say to this idiot and why would I waste my time? I have managed today to get Beth Israel to change his appt from 8/21 to 8/14 which I thought was some improvement, with Dr. Leffler in Celiac Center there. But, it still seems unbearably far away for Peter. How do we not lose our minds at this point? Thanks, Ann

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So my son Peter went to see this new Boston, GP who came highly recommended. He felt that having a GP for most of the referrals would be helpful and since he feels he really needs to be hospitalized, he would then have an "official" doctor. This was worse than ever -- this guy basically said that Lyme and Celiac are not recognized by the medical community nor by him and that Peter should just go on antidepressants cause he is fine -- having had a normal looking colonoscopy and endoscopy. Peter responded with, "I cannot believe you are saying this. I have lost 20 lbs in two months, am in chronic pain in muscles, joints, and stomach, headaches all the time, diarrhea all the time, fearing losing my job cause I can no longer even work and am only 24 years old and you are telling me I am fine and need antidepressants??!!" It is all like a really bad movie. The jerk doc took more blood, God only knows for what and dismissed my dear, sick son who at that point, began to fall apart and asked the doc to just "call my mother." He will call tomorrow, but really what is there to say to this idiot and why would I waste my time? I have managed today to get Beth Israel to change his appt from 8/21 to 8/14 which I thought was some improvement, with Dr. Leffler in Celiac Center there. But, it still seems unbearably far away for Peter. How do we not lose our minds at this point? Thanks, Ann

You said earlier he went on what he thought was a gluten-free diet for a couple weeks. Some (many) people begin to respond immediately, but not all. Some can take up to 6 weeks to begin seeing a positive response. Given what you've said if it was me I would go onto a strict elimination diet, and remove all dairy (including eggs), all grains (all non-vegetable carbs), soy, and nuts. Go to meats, fruit (quinoa is technically a fruit not a grain), and vegetables (preferably fresh uncooked), water, PURE GREEN TEA, and no refined sugar of any kind. Use agave syrup, PURE maple syrup, RAW honey (unheated, unpasteurized), or stevia as the only sweeteners. Some teas have soy lecithin or barley malt added. Keep a strict food diary for every meal and snack as well as noting health symptoms and overall wellbeing. After 4 weeks if there is a positive dietary response, continue for another 2 to 4 weeks. Then begin adding in ONE item a week. It can take up to 4 days before the body reacts to food intolerances, so it is critical that the diary be kept. If there is a negative response to the new item, remove it from the diet and return to the previous diet for a week or two. Also note that some food intolerances can be combinatory for some people (A or B are ok, but A and B = negative response). And since it can take 4 days to respond, and sometimes two weeks to full return from a negative response, it is very important to keep the food journal for an extended period of time (months to years).

Also note that some people react to the same food differently in different forms. For example, I can eat fresh or frozen corn, but ground corn and corn syrup I cannot eat.

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So my son Peter went to see this new Boston, GP who came highly recommended. He felt that having a GP for most of the referrals would be helpful and since he feels he really needs to be hospitalized, he would then have an "official" doctor. This was worse than ever -- this guy basically said that Lyme and Celiac are not recognized by the medical community nor by him and that Peter should just go on antidepressants cause he is fine -- having had a normal looking colonoscopy and endoscopy. Peter responded with, "I cannot believe you are saying this. I have lost 20 lbs in two months, am in chronic pain in muscles, joints, and stomach, headaches all the time, diarrhea all the time, fearing losing my job cause I can no longer even work and am only 24 years old and you are telling me I am fine and need antidepressants??!!" It is all like a really bad movie. The jerk doc took more blood, God only knows for what and dismissed my dear, sick son who at that point, began to fall apart and asked the doc to just "call my mother." He will call tomorrow, but really what is there to say to this idiot and why would I waste my time? I have managed today to get Beth Israel to change his appt from 8/21 to 8/14 which I thought was some improvement, with Dr. Leffler in Celiac Center there. But, it still seems unbearably far away for Peter. How do we not lose our minds at this point? Thanks, Ann

Hi Ann,

Lyme and Celiac aren't recognized by the medical community?!?!?! I'm so sorry to hear that your son got another doofus for a Dr. They're not God, you know the saying, if doctors knew what they were doing, they wouldn't call it PRACTICING medicine. Basically, you have 2 choices - your son can keep going to different doctors until he finds one that listens, or he can go on a gluten-free diet (making sure the diet is absolutely gluten-free) for a few months. It has to be longer than two weeks because it takes a while to clear out of your system. My sinuses and digestive symptoms improved about 50% the first few days but it took more than 6 months for the fatigue to lessen. I still get constipated a lot, and D once in a while. I've been wheat free since sept. 08 and gluten-free since nov. 08. One caveat - if he chooses the gluten-free diet, he won't be able to be tested for Celiac because you have to be eating gluten for the tests to be accurate. I didn't know this before I went gluten free and I'm not about to make myself sick for 3 months just to prove to someone that I shouldn't eat gluten....

I hope things improve quickly. Let me know if you want to talk off the board and I'll get you my email.

R

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Hi Ann,

Lyme and Celiac aren't recognized by the medical community?!?!?! I'm so sorry to hear that your son got another doofus for a Dr. They're not God, you know the saying, if doctors knew what they were doing, they wouldn't call it PRACTICING medicine. Basically, you have 2 choices - your son can keep going to different doctors until he finds one that listens, or he can go on a gluten-free diet (making sure the diet is absolutely gluten-free) for a few months. It has to be longer than two weeks because it takes a while to clear out of your system. My sinuses and digestive symptoms improved about 50% the first few days but it took more than 6 months for the fatigue to lessen. I still get constipated a lot, and D once in a while. I've been wheat free since sept. 08 and gluten-free since nov. 08. One caveat - if he chooses the gluten-free diet, he won't be able to be tested for Celiac because you have to be eating gluten for the tests to be accurate. I didn't know this before I went gluten free and I'm not about to make myself sick for 3 months just to prove to someone that I shouldn't eat gluten....

I hope things improve quickly. Let me know if you want to talk off the board and I'll get you my email.

R

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Ahhhhhhhhhhhh, after begging in tears yesterday morning to Dr. Leffler's receptionist at Beth Israel Deasoness Celiac Center in Boston and literally then, getting down on my hands and knees in my dining room in NC looking upwards and praying my head off (mind you I am an Episcopalian and not an overly religious one at that!), a miracle occured! A patient who had an 8 am appt this morning, canceled and as we speak, my son Peter is being seen by Dr. Leffler! I have shed tears of gratitude and now hope to good God that at least Peter is told that he has not lost his mind and that someone can diagnose him accurately. If not Celiac, then hopefully he can be moved onto whomever can help him best with whatever other possibilities there are. Leffler looks to have an excellent reputation, background of training with Dr. Peter Green in NY and currently working with Dr. Cieran Kelly in BI. All who have written -- thank you so much so far... very, very helpful. Ann, waiting with baited breath.....

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Ahhhhhhhhhhhh, after begging in tears yesterday morning to Dr. Leffler's receptionist at Beth Israel Deasoness Celiac Center in Boston and literally then, getting down on my hands and knees in my dining room in NC looking upwards and praying my head off (mind you I am an Episcopalian and not an overly religious one at that!), a miracle occured! A patient who had an 8 am appt this morning, canceled and as we speak, my son Peter is being seen by Dr. Leffler! I have shed tears of gratitude and now hope to good God that at least Peter is told that he has not lost his mind and that someone can diagnose him accurately. If not Celiac, then hopefully he can be moved onto whomever can help him best with whatever other possibilities there are. Leffler looks to have an excellent reputation, background of training with Dr. Peter Green in NY and currently working with Dr. Cieran Kelly in BI. All who have written -- thank you so much so far... very, very helpful. Ann, waiting with baited breath.....

That's great!!!! Please definitely let us know how it goes. Whatever is wrong, I hope they figure it out quickly.

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That's great!!!! Please definitely let us know how it goes. Whatever is wrong, I hope they figure it out quickly.

How did he get on? Hope things are looking up for him :)

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I can hardly stand this anymore with my 24 yo son in Boston in agonizing joint pains, chronic diarrhea, stomach pains, unable to sleep, losing weight every day and already too thin, depressed, confused, shaking, feeling faint, etc. Now, he is barely able to work. He just called tonight wondering if he should go to an ER at Beth Israel hospital and I don't know what to say. We have been trying, trying, trying to get an appt asap at either Columbia Medical Ctr - Dr. Green's group in Ny with Dr. Tennyson (takes his insurance) or Dr. Leffler who works with Dr. Kelly at Beth Israel in Boston. The soonest appt now is Aug 21st with Leffler, no appt yet with NY. He calls each day hoping for a cancelation but no dice. He had a colonoscopy and endoscopy and biopsy last week with a totally unknowing GI in Boston who immediately denied GD before even doing testing. Nothing showed in tests. My son says that he cannot go on this way and wants to go into a hospital tonight. If he does though, what will happen? No one will know how to treat or what to treat for and it will be nightmare on top of nightmare. Any suggestions? Please answer me with whatever you can suggest. I am in NC and it is torture knowing the pain and misery my son is in, so far away. Thanks Ann

I don't know but my friend was sick like that and she was bruising really easy and couldn't keep andything down losing weight and immune system getting depleated and we are associates of Max International and I asked her if she wanted to try some Complete Vitamins to see if it would help her and she called me up after talking to her doctor and he told her to get on some good vitamins and when she called me. I told her about N-Fuze and Max GXL she started on the N=Fuze and she called me the next day and it helped her alot week later she tryed the MaxGXL and it helped so much it is helping her so she can cope with life alittle she had colonoscopy and endoscopy done to and she just got told she had Celiace Disease. Can't have Glutin. I don't know if it would help but I take it and it isn't a cure but it helps your immune system and other things to. I am not saying it is a cure just what i seen in my friend. good luck. Maxamizelife

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