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tired47

Accpuncture/nutritionist

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Hi Everyone,

I am a desperate woman looking for some relief....still doing testing and all negative for celiac and crohn's disease. But all my symptoms - fatigue, diarrhea, malabsorption, erosions/flatten villa on small bowel, big weight loss in past year, now on gluten free diet for 3 week .

My question- has anyone had improvement in their symptoms from accupuncture or seeing a nutrtitionist. I saw accupuncturist yesterday. He feels he can help me.... had 1st treatment, more energy today but no better appetite like he said I would. He said it will take time, go back next week. Let me know if anyone else had good sucess. I also have a nutritionist name, but have not made appt yet.... anyone have good luck with this??? I have been going round for 15 months and am trying hard to get some form of a "nomal" life back, so any ideas so greatly welcomed!!! Thanks.

:rolleyes:

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Celiac.com Sponsor (A8):

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My husband and I have both had acupuncture, for different reasons other than appetite/fatigue, but it has worked wonders. Fixed for my husband what no traditional dr could diagnose, yet alone fix. It usually takes some time though. Not too long, but give it a few sessions. I hope it works soon!!!


Be yourself, everyone else is taken.

Oscar Wilde

Gluten free November 2007

IgA Deficient, Neg Bloodwork, Double DQ2 Positive

Dietary and Genetic Diagnosis June 2, 2008

Soy free Jan 09

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Hi Everyone,

I am a desperate woman looking for some relief....still doing testing and all negative for celiac and crohn's disease. But all my symptoms - fatigue, diarrhea, malabsorption, erosions/flatten villa on small bowel, big weight loss in past year, now on gluten free diet for 3 week .

My question- has anyone had improvement in their symptoms from accupuncture or seeing a nutrtitionist. I saw accupuncturist yesterday. He feels he can help me.... had 1st treatment, more energy today but no better appetite like he said I would. He said it will take time, go back next week. Let me know if anyone else had good sucess. I also have a nutritionist name, but have not made appt yet.... anyone have good luck with this??? I have been going round for 15 months and am trying hard to get some form of a "nomal" life back, so any ideas so greatly welcomed!!! Thanks.

:rolleyes:

Welcome Tired,

You did not mention what tests you did have, but fatigue diarrhea, malabsorption, weight loss and flattening of the villi are classic Celiac symptoms. Villi atrophy is an indication of Celiac.

I have no experience with an acupuncturist and can't imagine how one could help if indeed you have Celiac. The only true relief and control of Celiac is a total gluten free diet. This site can help you more than any professional nutritionists.

Celiac Blood Testing is not 100% accurate. If you are not going to pursue further testing, there is no reason why you can't try the diet and see if it can help. A possitive dietary response is a diagnosis in itself.

Hope this helps.


Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

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Welcome Tired,

You did not mention what tests you did have, but fatigue diarrhea, malabsorption, weight loss and flattening of the villi are classic Celiac symptoms. Villi atrophy is an indication of Celiac.

I have no experience with an acupuncturist and can't imagine how one could help if indeed you have Celiac. The only true relief and control of Celiac is a total gluten free diet. This site can help you more than any professional nutritionists.

Celiac Blood Testing is not 100% accurate. If you are not going to pursue further testing, there is no reason why you can't try the diet and see if it can help. A possitive dietary response is a diagnosis in itself.

Hope this helps.

I don't mean to poo-poo alternative treatments, just not familiar with acupuncture in relation to Celiac Disease. :D


Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

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Guest LittleMissAllergy

I actually just had my first acupuncture treatment last Friday and posted a post just like yours! Ironically, I'm actually going back today. I'm going for digestive relief as well...I've had an extreme weight loss, extreme digestive discomfort, fatigue and horrible constipation. She thinks she can help...so maybe we can compare notes as we go? I wish you lots of luck! And I'd love to hear from other people as well with success stories...

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I actually just had my first acupuncture treatment last Friday and posted a post just like yours! Ironically, I'm actually going back today. I'm going for digestive relief as well...I've had an extreme weight loss, extreme digestive discomfort, fatigue and horrible constipation. She thinks she can help...so maybe we can compare notes as we go? I wish you lots of luck! And I'd love to hear from other people as well with success stories...

Yes, Please let me know your progress, as I will post mine here. I have similar issues, 35+lbs. weight loss ( still losing), diarrhea, extreme fatigue, vitmain/mineral deficiencies that have affected my heart rhythm ( now on verapamil). I am still looking for an answer but need help til I get it.... every test is negative, Great, right, except I need an answer. Also let me know all the tests you have done so far. Keep me posted. Thanks.

:rolleyes:

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Guest LittleMissAllergy
Yes, Please let me know your progress, as I will post mine here. I have similar issues, 35+lbs. weight loss ( still losing), diarrhea, extreme fatigue, vitmain/mineral deficiencies that have affected my heart rhythm ( now on verapamil). I am still looking for an answer but need help til I get it.... every test is negative, Great, right, except I need an answer. Also let me know all the tests you have done so far. Keep me posted. Thanks.

:rolleyes:

I know how frustrating it is...all of my tests come back negative too. Celiac came back negative, Crohns came back elevated but they couldn't find it in the colonoscopy so I wasn't diagnosed. I had to seek help outside of my conventional doctors. I found a private MD that tested for heavy metal toxicity and he found that I have an outrageous amount of heavy metals in me...but that's all we've found. What's your diet like? Mine keeps getting more and more restricted...no gluten, dairy, fat (that's a hard one...the weight loss is kind of scary that comes with that), meat, sugar, or citrus fruits.

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I know how frustrating it is...all of my tests come back negative too. Celiac came back negative, Crohns came back elevated but they couldn't find it in the colonoscopy so I wasn't diagnosed. I had to seek help outside of my conventional doctors. I found a private MD that tested for heavy metal toxicity and he found that I have an outrageous amount of heavy metals in me...but that's all we've found. What's your diet like? Mine keeps getting more and more restricted...no gluten, dairy, fat (that's a hard one...the weight loss is kind of scary that comes with that), meat, sugar, or citrus fruits.

So far my diet is only Gluten - free. I am scheduled to see a nutritonist in 1 1/2 weeks to see what she thinks. She came highly recommended by a "healed" crohn's pt. Any other ideas would be great... although I really hate to give up dairy/soy unless I am tested and it shows a problem. The gluten-free diet has not made any great changes in my health but I strictly sticking to it. I eat fresh fruits, vegetables, chicken, fish, some dairy, soy milk. I would love to have less fatigue, more energy,an appetite, no more weight loss and just feel better. I am afraid if I cut out more dairy I will lose even more weight......

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Guest LittleMissAllergy

I know how scary the weight loss can be...I wish you lots of luck with battling that. If you do indeed cut out more from your diet, we can always bounce ideas off one another on snack/meal ideas to boost those calories.

I had another acupuncture appointment yesterday and it was actually pretty painful, which surprised me! Has that happened to you? Or to anyone for that matter...my acupuncturist told me that when you have pain during treatment in your lower legs that means that you have issues with your spleen, which means you have a pretty bad problem with digestion. I kind of already figured that, but I thought it was interesting...

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I know how scary the weight loss can be...I wish you lots of luck with battling that. If you do indeed cut out more from your diet, we can always bounce ideas off one another on snack/meal ideas to boost those calories.

I had another acupuncture appointment yesterday and it was actually pretty painful, which surprised me! Has that happened to you? Or to anyone for that matter...my acupuncturist told me that when you have pain during treatment in your lower legs that means that you have issues with your spleen, which means you have a pretty bad problem with digestion. I kind of already figured that, but I thought it was interesting...

Hi again!! I had accupuncture last year... it was not painful at all, relaxing. The new person I am going to comes to my Dr. office ( alot closer to home and works with my insurance). However, like you I had one treatment and it was /uncomfortable/painful. He said to tell me if I have pain and he would adjust/ which he did. He said his needles were more "powerful", does that mean bigger??? I was afraid to look. My pain was just at the site of the one or two needles. But I did have a "pulling" sensation in my abdomen ( at needle sites). He said this was good and it was working???? He also said to look in the mirror when I left, I now had some color in my cheeks, he says is good . He said I am very pale ( I agree, I have been very pale). He used alot more needles, talked to me explaining things which the other accupuncturist did not. He also said according to him a digestive problem is hypospleenic and that would push my liver to hyper because it was unbalanced, causing fatigue, anxiety, depression. Not sure what I believe, but I have a nice bruise between my thumb and 2nd finger and one on my stomach. Never had that before any time, but I do have more energy.... is it a concidence??? I will go a few more times before I make up my mind about all this. Let me know what you or anyone else out there who has experience with this thinks... have a great weekend.

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Hi again!! I had accupuncture last year... it was not painful at all, relaxing. The new person I am going to comes to my Dr. office ( alot closer to home and works with my insurance). However, like you I had one treatment and it was /uncomfortable/painful. He said to tell me if I have pain and he would adjust/ which he did. He said his needles were more "powerful", does that mean bigger??? I was afraid to look. My pain was just at the site of the one or two needles. But I did have a "pulling" sensation in my abdomen ( at needle sites). He said this was good and it was working???? He also said to look in the mirror when I left, I now had some color in my cheeks, he says is good . He said I am very pale ( I agree, I have been very pale). He used alot more needles, talked to me explaining things which the other accupuncturist did not. He also said according to him a digestive problem is hypospleenic and that would push my liver to hyper because it was unbalanced, causing fatigue, anxiety, depression. Not sure what I believe, but I have a nice bruise between my thumb and 2nd finger and one on my stomach. Never had that before any time, but I do have more energy.... is it a concidence??? I will go a few more times before I make up my mind about all this. Let me know what you or anyone else out there who has experience with this thinks... have a great weekend.

Dear all,

Just wanted to relate my progress as it may help even one other person. I had the 3rd accupuncture today and I am feeling better. Not as much fatigue, mind fog, bloating or diarrhea. Yes, it also could be the diet working for me - at the advice of nutritionist I have given up dairy, soy, anything processed, pretty much fish, chicken ,veggies, and limited fruits. But whatever I am feeling better so I like to think it was a combination of all those things... I hope this somehow helps someone else!!! Good luck to all!

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So far my diet is only Gluten - free. I am scheduled to see a nutritonist in 1 1/2 weeks to see what she thinks. She came highly recommended by a "healed" crohn's pt. Any other ideas would be great... although I really hate to give up dairy/soy unless I am tested and it shows a problem. The gluten-free diet has not made any great changes in my health but I strictly sticking to it. I eat fresh fruits, vegetables, chicken, fish, some dairy, soy milk. I would love to have less fatigue, more energy,an appetite, no more weight loss and just feel better. I am afraid if I cut out more dairy I will lose even more weight......

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It's good that you are feeling better. Sometimes it takes awhile to regain the weight that you have lost until the villi have had a chance to heal.

I have the perspective of being a Registered Dietitian (RD) with celiac. While the title "nutritionist" can be used by anyone, we have the benefit of a Bachelor's and lots of clinical practice before being admitted to the profession via national exams. Please be careful of anyone that tells you to eliminate too many foods (beyond the celiac scope), as sometimes this can create additional problems. That being said, I can say that I have learned lots both via my training AND information on this forum!

Crohn's is also an autoimmune disease. It cannot be healed, but it can go into remission with good medical care and a special diet. There is not a specific test for Crohn's, just colonoscopy and a set pattern of symptoms such as chronic diarrhea, bleeding, and painful cramping. Celiac and Crohn's can co-exist as two separate diseases in some people. Ironically, the diet during active Crohn's limits some of the foods that make the celiac diet palatable, such as nuts and other high fiber foods.

If acupuncture makes you feel better, it is a positive thing that you are doing for yourself. Anything that you can do to be proactive in your own treatment is a bonus. :D

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But all my symptoms - fatigue, diarrhea, malabsorption, erosions/flatten villa on small bowel, big weight loss in past year, now on gluten free diet for 3 week .

This caught my eye. You had flattening of the villi in your small intestine, but they told you it's negative for celiac? You might be interested to know that the newest guidelines for diagnosing celiac also recognise that the villi are going to be flattened before they are completely wiped out. Your doctor might have gone by the old-fashioned definition of celiac where they expect total athropy before they call it celiac. If you want to have an official diagnosis, it might be useful to ask if they've kept samples of your biopsies, and then to seek a second opinion from someone who is more up to date, to have a look at your biopsies again.

I think you'll find that you will start feeling better after a while on the gluten free diet. Please don't think that because you don't have an official diagnosis on paper that you need to be less careful with cross contamination and such.

Pauliina

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This caught my eye. You had flattening of the villi in your small intestine, but they told you it's negative for celiac? You might be interested to know that the newest guidelines for diagnosing celiac also recognise that the villi are going to be flattened before they are completely wiped out. Your doctor might have gone by the old-fashioned definition of celiac where they expect total athropy before they call it celiac. If you want to have an official diagnosis, it might be useful to ask if they've kept samples of your biopsies, and then to seek a second opinion from someone who is more up to date, to have a look at your biopsies again.

I think you'll find that you will start feeling better after a while on the gluten free diet. Please don't think that because you don't have an official diagnosis on paper that you need to be less careful with cross contamination and such.

Pauliina

Thanks all, this is still very confusing to me. I see my Dr. in two weeks. Any ideas what questions I should ask him. Previously he said if biospy neg, bloodwork neg, celiac gene test neg- celiac is highly unlikely- do you all agree/disagree??? Is there a medical test for gluten intolerance??I am still on the gluten free diet and restricted dairy, sugars to help healing per nutrtionist/dietician. If I feel better in 6 months \should I try gluten again and see if my symptoms flare up??? Any advice is always appreciated.Thanks all

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I would get your records and copies of those tests and the results and get a second opinion. Flattened villi are the 'gold standard' for celiac diagnosis. I don't know why with that result your doctor would say it was negative. If your doctor gets upset that you want a second opinion take all your records and run to someone else.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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