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#519120 - 10/25/18 08:22 AM New Diagnosis of my 12 year old daughter
BarbaraCF Offline
New_Member

Registered: 10/21/18
Posts: 4
Hi my name is Barbara. Our family moved from New Jersey to Hong Kong last year. This August, MRI showed my 12 year old has erosion at her left SI joint, so AS is diagnosed. Her CRP was negative and ESR is 17. HLB-27 test was weak positive, right now waiting for DNA test result from US.
We went to Naturapeth here, GI Map shows she had leaky gut (zonulin test), and high amount of Klebsiella Pneumoniae. Now she is on SCD diet(dairy free, gluten free, soy free, no sweet potatoes and potatoes, refined sugar free, grain free) for 1 month now and taking herbs to kill KP for these 2 months, then next month will be repair gut lining by taking different kind of supplements. She has been on SCD for one month, her pain is similar- 5 out of 10 when lying down and walking sometimes.
My question is how long it takes for this diet to work? She eats fruit, meats, few fish and vegetables.( no nightshades). We think by healing his gut and kill the KO, her symptoms (pain) may disappear!
And should I let her try low dose Naltrexone in America? It’s still safer than chemo drug her rheumatologist wanted to use on her! Please advise and help. We are new to the board and anxious...Thanks. Barb

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#519121 - 10/25/18 12:26 PM Re: New Diagnosis of my 12 year old daughter [Re: BarbaraCF]
DragonSlayer Offline
AS Czar

Registered: 09/05/01
Posts: 6057
Loc: Reno or SFLU Philippines
WELCOME, barb!

Sorry about Your daughter's diagnosis, but You have come to exactly the right place and the people here can give You the best dietary advice from direct experience.

Really, the time it takes to see improvement through diet depends upon many factors that are very individualistic; gut integrity is a major factor but also whether SIBO is present, the amount of time a person has had AS symptoms, and other issues. Some people have noticed improvement within a week or so, but the majority of us take much longer and need to 1) be patient, 2) persistent and 3) careful with "experimentation;" that is--it takes some time to learn what is safe and what is not.

Sometimes eliminating the bacterium and healing the gut at the same time is difficult because gut-nourishing foods often feed the Kp.

Very important to get DNA level test, but if she has the symptoms and the obvious radiographic progression the diagnosis is pretty accurate.

The naltrexone (LDN) has helped some people but I don't have direct experience with it, so my opinion is that some people have found more temporary relief with this perhaps; the main thing is diet. Although I am not opposed to the biologics, I discovered--for me--that antibiotics worked very well and because they directly affect the cause of AS, I have not had to stay on these drugs but remain in remission many years later. But these are also dangerous drugs and must be used with great caution and important to have a physician's supervision of course.

Wishing You both all the best results--just remember this is a rocky road and there will be setbacks, but long-term outcome will be very good and I am convinced that the permanent skeletal damage can be totally halted through diet.

John
_________________________
Important AS Resources

Professor Ebringer: On Diet and AS;


RED ARROW --> Philippines

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#519122 - 10/25/18 07:02 PM Re: New Diagnosis of my 12 year old daughter [Re: DragonSlayer]
BarbaraCF Offline
New_Member

Registered: 10/21/18
Posts: 4
Thank you , John.

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#519245 - 12/05/18 01:30 PM Re: New Diagnosis of my 12 year old daughter [Re: BarbaraCF]
finnari Offline
Veteran_AS_Kicker

Registered: 06/02/07
Posts: 526
Loc: phoenix
maybe the diet just wont work.

Try biologics like enbrel before fusion starts taking place.

Dont let people scare you about how "dangerous" they are.

Ive never felt healthier on them and felt terrible on the diet and natural methods.

I repaired my gut through no dairy/no gluten. It works fine but still had terrible AS.

Only biologics worked. They are proven and safe.


Edited by finnari (12/05/18 01:31 PM)

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#519247 - 12/06/18 07:05 AM Re: New Diagnosis of my 12 year old daughter [Re: finnari]
Cymro Online   content
New_Member

Registered: 11/01/18
Posts: 23
Originally Posted By finnari
maybe the diet just wont work.

Try biologics like enbrel before fusion starts taking place.

Dont let people scare you about how "dangerous" they are.

Ive never felt healthier on them and felt terrible on the diet and natural methods.

I repaired my gut through no dairy/no gluten. It works fine but still had terrible AS.

Only biologics worked. They are proven and safe.


I am just glad to find someone on this Forum I can agree with. I consider diet and natural methods little better than witchcraft and mumbo jumbo.

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#519259 - 12/07/18 01:50 PM Re: New Diagnosis of my 12 year old daughter [Re: BarbaraCF]
vazai Offline
New_Member

Registered: 11/10/18
Posts: 4
Barbara you said that she's been on diet for one month with no results, but you don't say if she's taking any medicines. Is she on NSAIDs?

I believe that NSAIDs can quickly lower the inflammation and thus pain. They should be used right away to reduce the disease activity.

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