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    Do you have questions about celiac disease or the gluten-free diet?

nederlandse

I Need Helpful Sugestions From Success Stories

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Hello I just moved to Jersy 6 months ago and I will only be here 6 more months before moving again. I want to be farther down the path of better health before I leave. Rather than continuing the slow process of diagnosis alone, and risk more second guessing, can anyone recommend me a good doctor in the NJ / NYC area? I really need someone who will listen to everything and help me make informed decisions.

I want a referral from you because the last MD I found in the phone book made her diagnosis in 10 minutes flat. She told me I had IBS (and that she did too) and it was nothing to worry about and I can eat whatever I want... She said this even though the food-symptom journal I'd kept after going gluten-free for the past month indicated that what I eat makes a huge difference in my symptoms (but she refused to look at the journal). When I do eat the wrong things, I get so ill I don’t want to move for about 3 days (I did tell her this).

I've gotten much better on the gluten-free diet, but still have bad spells that I think are accidental ingestion of gluten (I travel a lot which means - eating out - no guarantee of gluten-free food). It might be that I'm allergic to something else entirely. My old symptoms aren't completely gone and one seems worse --> The latest weird symptom I've acquired is that all my joints have started popping and cracking loudly. I never used to have any cracking joints except occasionally my knees. Now even my ankles, elbows and shoulders are their own drum-line. Quite frankly, it's scaring me. Please help.

My story (feel free to skip this):

Since high school I've had a growing intolerance to lactose. <Gluten free diet has let me enjoy icecream / milk / butter again. Never thought that was possible!> Last year, following ACL surgery, I started having serious symptoms regardless of how much dairy I consumed (GI-you name it i had it, low energy, dark circles under my eyes, getting flue like symptoms in the summer, insomnia, weird skin problems, even wrinkles on my face - and I'm only 24! - and bloating and edema). In short, I was sick all the time but since the symptoms seemed so 'unrelated' I was the only one who could tell. I didn’t know what to tell the doctor so I didn't go to one until much later.

At the onset of all these new symptoms, though, all of my complaints started out of the blue. I used to be very athletic / health conscious and healthy. I even thought, “oh, maybe I've just hit the age where my body is slowing down. . .” But things continued to get worse, and after lots of online research and attending a course on immunology (for work) I came across celiac's disease and related issues. I've seen a few doctors both at my last location and here in NJ but while they admit there’s something wrong (stomach biopsy showed damage but other tests came back negative), they couldn't tell me what. By this time I'd already put myself on a gluten free diet - so maybe that’s why the tests were negative (?) <how long do you have to be gluten-free before a test will show up negative?>. What makes it all worse was that it seems like the doctors don’t like the fact that I have done some research already . . . The last MD seemed practiced at making me feel like I am a hypochondriac.

Those who know me know that when I say 'ouch' something really hurts. I don't know how to have a doctor understand this and take me seriously though. I guess I look pretty healthy (and young / naive?) - especially since going gluten-free (wrinkles and dark circles around my eyes are virtually gone! I can sleep again most nights too). The other posts on this site (symptom wise) read like the pages of my food-symptom journal. I know I need to get to the bottom of this soon so I can get back to being my old self.. or.. so i can keep from getting worse. The low energy levels have put my life on slow-motion (but I’m a pretty active person by nature, so again, most people would never know). I've eliminated gluten from my diet and noticed huge improvements in my well being but I'm still far from where I used to be. Like many people posting on this site, I think there might be more wrong (other allergies? what else?). Maybe my huge diet change has left me lacking some nutrients? Maybe I should take additional vitamins? Maybe none at all? I really wish I could find a professional to help me keep get better.

If you've taken the time to read / respond, I sincerely thank you.

Jessica

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Hi, I hope you keep finding someone who will listen to you. I think that's the only way in my experience. Try to be calm though. Also, when you have surgery, sometimes your body has a low iron level--you may want to check this. Also, I hope you go back to whoever did your surgery and tell them what you have been feeling because they may know.

I am currently looking to see if gluten has an effect on my acne, which I believe it does based on the patterns and journaling I have been doing and past experiences. I told my dermatologist who could not treat my acne, except to tell me that I could have acne until I was 45 ( to which I instinctively don't believe) that it may be an allergy, and he laughed saying, "no one believes acne is an allergy." Well, I know it could be an allergy reaction to something I am eating because I have had clear skin before until I get bad ones from eating certain foods again. Like crackers has barley malt which is gluten obviously, and I always notice pus-filled acne. I know now I will not eat them again just like the chocolate powder.

There was another skin condition that I had, and I went to three different doctors before I could find a treatment for it. Ironically, it was the dermatologist who tried to treat my acne. As I read online, I find that there are doctors who will believe you.

Right now, I am unsure whether or not to get an allergy test done for certain foods because as you know there are silly statements everywhere that acne is not caused by food. I am worried to, but I know the best way is probably to keep trying. Well, if I get 5 nasty acne including (rarely) near my ears from crackers, how could it not be from food? If ate almost salad, salmon and oatmeal for 3 days before, and it cleared up my cystic back, how could it not be from food? So, I am like, "hello?" Someone's got to be open-minded.

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Fairy,

It sure sounds like Celiac to me. If you biopsy showed it or signs of damage you have it, all the other tests are moot. The thing is many time the blood tests will come back with false negatives because you need to be on Wheat/Gluten for anywhere from 3-6 months straight. So, if you feel better gluten-free/wheat-free then you already know what you are and avoid it big time. I have just changed doctors due to one who wouldn't do anything and believe me I have had mine confirmed through skin biopsy, I will not do a gluten challenge again for anyone.

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Thank you for your response and input.

I will keep looking. The more I hear from other people, the less I second guess myself - its a bad trait I need to get over as much as gluten ;).

so, thank you again!

By the way, I have noticed the same thing with acne - I was relativley acne free through out my teens and in the last year it got rediculous. In the last month its finally started clearing up. But I accidentally ate something bad and got some soars in my mouth... that was a first! The acne is still gone though - hopefully it will remain that way for both of us. The other wierd place I got it was my upper arms, it comes and goes quickly if i accidentaly eat something but before I changed diets, I never would have thought it was related to what I ate.

One more thing. You mentioned Chocolate Powder. Which brands have you tried and which gave you trouble? I would be very sad if I couldnt have chocolate. Swiss Miss seems to be ok for me in terms of hot cocoa. Have you tried Swiss Miss?

All the best,

Jessica

Hi, I hope you keep finding someone who will listen to you. I think that's the only way in my experience. Try to be calm though. Also, when you have surgery, sometimes your body has a low iron level--you may want to check this. Also, I hope you go back to whoever did your surgery and tell them what you have been feeling because they may know.

I am currently looking to see if gluten has an effect on my acne, which I believe it does based on the patterns and journaling I have been doing and past experiences. I told my dermatologist who could not treat my acne, except to tell me that I could have acne until I was 45 ( to which I instinctively don't believe) that it may be an allergy, and he laughed saying, "no one believes acne is an allergy." Well, I know it could be an allergy reaction to something I am eating because I have had clear skin before until I get bad ones from eating certain foods again. Like crackers has barley malt which is gluten obviously, and I always notice pus-filled acne. I know now I will not eat them again just like the chocolate powder.

There was another skin condition that I had, and I went to three different doctors before I could find a treatment for it. Ironically, it was the dermatologist who tried to treat my acne. As I read online, I find that there are doctors who will believe you.

Right now, I am unsure whether or not to get an allergy test done for certain foods because as you know there are silly statements everywhere that acne is not caused by food. I am worried to, but I know the best way is probably to keep trying. Well, if I get 5 nasty acne including (rarely) near my ears from crackers, how could it not be from food? If ate almost salad, salmon and oatmeal for 3 days before, and it cleared up my cystic back, how could it not be from food? So, I am like, "hello?" Someone's got to be open-minded.

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Guest nini

if you are one of those people who needs to have a "answer" from a professional, then continue to consume gluten and get all the necessarry testing done. Keeping in mind that the tests can only confirm if it's positive, but cannot ever completely rule out Celiac... the testing just isn't that accurate yet. And no two experts seem to agree on diagnostic protocol. I went to a Gastroenterologist. I had the complete celiac panel done, but I did not and will not have a biopsy. I've been gluten free for almost 3 years now and am healthier than I've been in many years... my daughter was diagnosed based on positive dietary response and genetic predisposition (me having it)... her blood tests were inconclusive and she didn't have the biopsy... her ped. gi refused to believe she had it. anyway...

if you don't need a medical opinion you can do the gluten free diet and see if it helps your symptoms. Do it 100% including all personal care products as well as all the food and seasonings and drinks... if your symptoms improve, you can accept that as your answer or do a gluten challenge and monitor your symptoms. You do not need a dr.s permission to go on the gluten free diet. It can be a healthy diet for anyone. You may need supplements if your system is really damaged...

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Hi, thank you for your responses, and I am glad I helped nederlandse.

I don't know why I second-guess, but today I saw a brochure for Celiac in a place that has nothing to do with Celiac.

I am not completely familiar with all of the ingredients that means gluten, but I know of a few. I went through the cabinets and got some of them out. I put it in a box, and I talked to my mom who was the one to suggest I may be allergic to something and keep a journal. My mom is so hard to make understand. She says something, but is like a hypocrite on the other side if you know what I mean.

Well, I am feeling like I want to cry because I feel that all of us as a family should change the diet. My mom thinks it will rack up her bill because see I am living at home, but I contribute to the food or buy foods for myself--for example, I get really bad gas, and I am taking soy milk which helped. I bought gluten-free cream cheese, but the bagel is not, and I got gas after that. Something's not right.

Anyway, so I told my mom this, and I said- "mom, when you go to the store, look at these ingredients on the refrigerator." She said, "I will buy what I want." And her common response lately is, "You know? I don't complicate myself." I said, "what do you mean? What do you mean? She says,"Well, if you have it, then you should go to the doctor and get something." I said, "Give me what? Pills?" There's no pills for this condition!! I am SOO mad. My brother has been having bad acne and is eating stuff with gluten. He drank eggnog during Christmas and his acne got horrible.

Also, in 2005 before Christmas...I knew this would happen, but I would give in to see if it would still happen, and I ate a fruitcake I made. I ate that plus eggnog, and I got really, really, really bad acne on my chin. It was SO embarrassing. I went to work and wanted to not look at anyone because I didn't have it before that. After Christmas, I didn't have fruitcakes or junks, and my acne cleared up.

Also, when I don't eat well--like if I eat crap that is likely to have gluten, my face looks dull--my undereye circle is more prevalent. I also have sort of dry frizzy hair that also I have noticed have been limp for the past few years.

I mean they are horrible acne, so gross and big in diameter. Someone asked me if it was DH, but I saw a picture and description online, and it doesn't relate to my condition. It may be something that is not talked about greatly in the community. I dislike when doctors and articles continue to say that acne is not caused by food, but I am seeing the pattern!! And that makes me so irrate. It's like, I want it to be known, so people wouldn't sweep it under the carpet while miserably searching for a cure. If I went gluten-free for 3 days eating nothing but salmon, salad, and oatmeal and my back was cleared up--something is wrong.

My mom is being unfair here, and I don't know how to talk to her, so that she was more compassionate. I told her, "mom, if I was a little girl, wouldn't you care about it?" I can guarantee you that my mom would be like most mom who would do anything to get rid of gluten, but now that I am older, it's a lot different because I am in control of whatever I eat--she's not watching like you would a kid. Older kids are more independent. She told me well, buy it with your own money because she feels the bill will rack up. I said, if we buy food that's gluten for all of us, it wouldn't be so high--she doesn't get that.

It really bothers her that I have acne, and she knows my face improves during certain times--but why? She knows how Retin-A and antibiotics has failed me miserably. It worked for her, so she's thinking a little selfishly, but I can tell you that she gets some acne on her back and grease like things from her pores (I can't explain this), and all she does is say is that her skin has alwasy been weird just because. There's no just because.

Well, I am off venting, but I wish I could get support. It would mean so much. Has anyone had this problem with a family who was ignorant or hypocrite when it comes to wanting to be gluten-free?

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Nini, Thanks for your response. I'm glad you were able to identify the problem and save your daughter a lot of grief. I agree, an MD's diagnosis is not necissary for a healthier diet, and I have been doing much better without the gluten. What I would like a doctor's help with is the supliments and symptoms. Mainly, my cracking and achey joints worry me that I am overlooking something (either accidental gluten intake (not sure from what though), another unidentified intollerance, or vitamin/nutritient deficiency). Perhaps there aren't proffessionals with more experties than that which I'll gather myself by continuing my 'research' via other people's experiences, monitoring my own responses and reading scientific articles.

I'm taking your advice and further ensuring a gluten free diet: I've ordered a celiac 'survival kit' (I hope not a waste of money) with complete meal replacements so that I'll have something easy to cary with / eat when away from home besides fruit and veggies (most of the time). Hopefully things will continue to improve as they have.

Again, many thanks!

if you are one of those people who needs to have a "answer" from a professional, then continue to consume gluten and get all the necessarry testing done. Keeping in mind that the tests can only confirm if it's positive, but cannot ever completely rule out Celiac... the testing just isn't that accurate yet. And no two experts seem to agree on diagnostic protocol. I went to a Gastroenterologist. I had the complete celiac panel done, but I did not and will not have a biopsy. I've been gluten free for almost 3 years now and am healthier than I've been in many years... my daughter was diagnosed based on positive dietary response and genetic predisposition (me having it)... her blood tests were inconclusive and she didn't have the biopsy... her ped. gi refused to believe she had it. anyway...

if you don't need a medical opinion you can do the gluten free diet and see if it helps your symptoms. Do it 100% including all personal care products as well as all the food and seasonings and drinks... if your symptoms improve, you can accept that as your answer or do a gluten challenge and monitor your symptoms. You do not need a dr.s permission to go on the gluten free diet. It can be a healthy diet for anyone. You may need supplements if your system is really damaged...

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Dear Fairy,

everything you've described does point to a problem with something you're eating. I'd give you the same advice that was given to me: put yourself on a 100% gluten free diet and keep it up for a few months. It's hard at first, but gets easier. The hard part is maintaining your consistency to make sure nothing bad slips into your food. Cooking at home rather than eating out makes this much easier but watch out for everything (even the oil you cook in). If you're going to go gluten-free and cook at home, my advice is to use all natural ingredients and make everything from scratch yourself. Simple dishes that make this easy: rice, chicken, corn, vegetables and fruit. you can also bake your own bread with gluten-free mixes. Yes, it will cost more money (especially while you're new to it), but it costs much less than going to the doctor when / if your symptoms take a turn for the worse like they did with me (I truely relate to your pain but trust me, acne and gas is nothing compared to what celiac can become).

As far as your mother and brother are concerned, yes, encourage them to consider a trial switch in diet, but take care of yourself first. This is vital. First, it's hard to take care of others when youre not at 100% yourself (this is why, if you've flown in an airplane, they tell you to put an oxygen mask on yourself first before helping others with their masks). While you do your trial, maintain a journal of your symptomes: everything. I suplimented mine with pictures (acne, dark circles around my eyes, wrinkles, bruising, even bloating and adema). When things take a turn for the better, take pictures again. Similarly, if they were to take a turn for the worse, again take pictures. When / if your trial is successful (after a few months for me) you should have ample evidence to show your mom (and brother) how much better you feel. A picture is worth a thousand words. Another important thing to keep in mind is how you aproach the issue. I've learned through similar issues with my dad (who despite healthy lifestyle has always had serious GI issues, vitamin deficiencies and now even a form of lymphoma - all associated with celiacs): you can't tell someone to change their diet, you can only present the information. The decision has to be theirs. The more you push, the less likely they are to consider such a huge change in life style. Its been close to 8 months since I first brought up the possibility that he might have celiacs to my dad. He has finally decided to try the diet. My mother is fully supportive. I sincerely hope its not too late for it to do him any good. The silver lining is it can't do any harm. :)

I hope this helps a little.

Hi, thank you for your responses, and I am glad I helped nederlandse.

I don't know why I second-guess, but today I saw a brochure for Celiac in a place that has nothing to do with Celiac.

I am not completely familiar with all of the ingredients that means gluten, but I know of a few. I went through the cabinets and got some of them out. I put it in a box, and I talked to my mom who was the one to suggest I may be allergic to something and keep a journal. My mom is so hard to make understand. She says something, but is like a hypocrite on the other side if you know what I mean.

Well, I am feeling like I want to cry because I feel that all of us as a family should change the diet. My mom thinks it will rack up her bill because see I am living at home, but I contribute to the food or buy foods for myself--for example, I get really bad gas, and I am taking soy milk which helped. I bought gluten-free cream cheese, but the bagel is not, and I got gas after that. Something's not right.

Anyway, so I told my mom this, and I said- "mom, when you go to the store, look at these ingredients on the refrigerator." She said, "I will buy what I want." And her common response lately is, "You know? I don't complicate myself." I said, "what do you mean? What do you mean? She says,"Well, if you have it, then you should go to the doctor and get something." I said, "Give me what? Pills?" There's no pills for this condition!! I am SOO mad. My brother has been having bad acne and is eating stuff with gluten. He drank eggnog during Christmas and his acne got horrible.

Also, in 2005 before Christmas...I knew this would happen, but I would give in to see if it would still happen, and I ate a fruitcake I made. I ate that plus eggnog, and I got really, really, really bad acne on my chin. It was SO embarrassing. I went to work and wanted to not look at anyone because I didn't have it before that. After Christmas, I didn't have fruitcakes or junks, and my acne cleared up.

Also, when I don't eat well--like if I eat crap that is likely to have gluten, my face looks dull--my undereye circle is more prevalent. I also have sort of dry frizzy hair that also I have noticed have been limp for the past few years.

I mean they are horrible acne, so gross and big in diameter. Someone asked me if it was DH, but I saw a picture and description online, and it doesn't relate to my condition. It may be something that is not talked about greatly in the community. I dislike when doctors and articles continue to say that acne is not caused by food, but I am seeing the pattern!! And that makes me so irrate. It's like, I want it to be known, so people wouldn't sweep it under the carpet while miserably searching for a cure. If I went gluten-free for 3 days eating nothing but salmon, salad, and oatmeal and my back was cleared up--something is wrong.

My mom is being unfair here, and I don't know how to talk to her, so that she was more compassionate. I told her, "mom, if I was a little girl, wouldn't you care about it?" I can guarantee you that my mom would be like most mom who would do anything to get rid of gluten, but now that I am older, it's a lot different because I am in control of whatever I eat--she's not watching like you would a kid. Older kids are more independent. She told me well, buy it with your own money because she feels the bill will rack up. I said, if we buy food that's gluten for all of us, it wouldn't be so high--she doesn't get that.

It really bothers her that I have acne, and she knows my face improves during certain times--but why? She knows how Retin-A and antibiotics has failed me miserably. It worked for her, so she's thinking a little selfishly, but I can tell you that she gets some acne on her back and grease like things from her pores (I can't explain this), and all she does is say is that her skin has alwasy been weird just because. There's no just because.

Well, I am off venting, but I wish I could get support. It would mean so much. Has anyone had this problem with a family who was ignorant or hypocrite when it comes to wanting to be gluten-free?

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Hi, Thank you. Last night, I was ready to "throw out" (means I really put some away) gluten foods, and I woke up wanting to cook pancakes. Oh my, that stuff has gluten. I can understand it is likely not going to be as easy as I think. One thing, I feel so bad not eating the food my mother helps buy along with mine. I have a new bag of whole wheat bagel that I ate from time to time. Last night, I didn't resist eating the leftover from last night. It's going to be a challenge and gradual like you said. Thank you for pointing that out. I got a bit of acne this morning. It seems if I eat too much products with gluten--the worse the acne, but I don't see the point on going low-gluten because I still get scarring and obvious blemishes and it is not worth it at all. It's going to take great discipline, but I know I can do it like many of you have.

I forgot to mention the chocolate powder. We have been buying chocolate powder that is a store brand. I know store brands can have poor ingredients. Before that I used to drink Quick. I haven't touched the stuff since. I am scared. I can't tell if the other brand would be better since it was a few years ago since we switched, but I am too scared to try it. However, I have bought an Organic chocolate bar that's a bit pricy, and I don't get those bad acne. I like chocolate mostly around the time of the month--I have learned not to obsess with chocolate everyday or too often. I leave it for my most craving points :). I have tried Swiss Miss, but I am so scared to test it out. I dissuaded my mom from making this good chocolate she makes with corn starch because I was so scared.

The challenge is just beginning :).

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This is really the one disease where you can do, in fact must do, the treatment yourself. You don't really need any confirmation from a doctor. Your own testing is as good, if not better, than theirs. I don't really even see how doctors add any value here, other than catching the ocassional case themselves before the patient does. Their nutritional training and information is non-existant, their tests are 50 years old and sadly inaccurate and they're often so busy and pressured they don't have time to deal with difficult cases.

If you're having problems getting things back in order in the GI region I heartily recommend the SCD diet. It involves preparing all your food yourself, but it sure is helping me!

Personally I went gluten free for a month to see if it helped. It did. I was magically symptom free. I decided to follow up with testing from enterolab.com just to know 100%. It was confirmed. My justification for the large price of that test was I could inform my relatives whether they had the genes or not. It was a waste of money, none of them are taking it seriously.

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What is the SCD Diet?

Interested!

This is really the one disease where you can do, in fact must do, the treatment yourself. You don't really need an confirmation from a doctor. Your own testing is as good, if not better, than theirs.

If you're having problems getting things back in order in the GI region I heartily recommend the SCD diet. It involves preparing all your food yourself, but it sure is helping me!

Question... does anyone know the truth about vinegar. I've heard mixed oppinions on this website. Or, perhaps I'm just confusing information. Is it usualy safe? Is it only Malt Vinigar that I need to worry about? Sushi rice, for example, contains vinigar. Can I assume its made from rice?

What is the SCD Diet?

Interested!

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www.breakingtheviciouscycle.info

www.pecanbread.com

The diet author makes some pretty outrageous claims of curing Celiac disease, which I don't believe, but it sure is helping me get my gut under control. I'll take that! :D

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