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#519581 - 04/11/19 08:54 AM Current Issues w A.S. Diet
Auggie Offline
New_Member

Registered: 12/20/17
Posts: 14
Hello all, it has been some time since I last posted.

I am still struggling w pain and I am considering trying biologic treatment. I have not been able to entirely ween myself off NSAIDS (& coffee) & I am having alot of issues still w inflammatory bowel. I am also struggling w getting sufficient nutrients & keeping my energy up (I have tried cooking, juicing, and blending my veggies & fruits so they are more easily digestible, but they are still inflaming my bowel after eating).
So, for starters, does anyone have suggestions re: replacing coffee w a coffee-tasting replacement and has caffeine that is no carb that might be more gently on my gut?
I've been taking oil, to the max I can tolerate for calories and gut healing, & I've been careful re eliminating anything that irritates or inflames my gut or causes flares, but wondering if anyone might have experienced these persistent issues themselves who might have some good suggestions?
Also wondering if anyone might have suggestions re more easily digested supplements for micronutrient replacement, etc.?
Also, like i said I'm considering biologic tx, though reluctant as I'd like to try for another baby and after reviewing lots of research I am still concerned taking these meds while pregnant or breastfeeding. Any one else experienced these concerns w helpful information?

Thanks for any info anyone might find helpful to share. In the meantime, I'll review the posts people have already responded to related to these topics in the forums. One last thing, has anyone read The Plant Paradox & what did you think re legitimacy of the book? I was thinking of getting the cookbook.

Sorry this is a story, but thanks ahead of time for reading :->
Regards,

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#519582 - 04/11/19 10:27 PM Re: Current Issues w A.S. Diet [Re: Auggie]
tvmanjon Offline
New_Member

Registered: 01/24/19
Posts: 14
Loc: Michigan
Auggie,
I have suffered with AS since I was 12 and am now 68. I went thru many alternate food trials (and other alternative treatments) and failed time after time. This last year was my worst ever. The biologics were no longer working very well. I knew between now and my end I wanted to beat this thing if possible. I bit the bullet hard. I started with Carol Sullivans book and then this forum. It has now been just about 3 months and I am finally seeing the light. My turning point was to stop ALL fluids except good water and dump all of my supplements. I tested my food and supplements religiously with iodine. I was surprised at the starch in the supplement's No more fried foods, no starch at all, no dairy, very limited carbs. It was cold turkey No coffee no tea nothing but soothing water on the gut. No nuts either. No citrus type fruits. My gut was a wreck and is just starting to heal. Its not mentioned anywhere that I have seen but use your BM to gauge your success until you see your BM whole and formed you need to do more. Read as many post here that you have time for and after awhile you will see the underlying theme get your gut better. It doesn't heal overnight. Do what ever you can do to sustain yourself on with the minimum if you want to avoid the biologics. Go to the Alternatives forum and read Duccans phototherapy story. Again if anything you can do immediately is water only the rest is poison to your gut lining at least for now.

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#519584 - 04/19/19 09:46 AM Re: Current Issues w A.S. Diet [Re: Auggie]
Bazel Online   content
New_Member

Registered: 12/28/18
Posts: 21
Dear Auggie,

I am using Embrel biological while trying to figure out the diet. It has no effect on fertility, as a man, my doctor says.
As long as your bowel is inflamed, I dont think the diet will really work. At least it has not worked for me yet. I am doing stool analysis now, to see why my gut is inflamed. First results are that I have food intolerances. I have high hopes that fixing my leaky gut will fix my AS.
I agree that you will have to do the diet cold turkey, or else itll probably be a lot of energy wasted. Taking that last step might mean a great dofferenxe, at least from what I am reading.

I suggest you find a very good lab to help you analyze your gut. I hope you will fimd what works for you, one way or the other. Seems like a different journey for everyone.

All the best.

-Bas

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#519594 - 04/30/19 10:07 AM Re: Current Issues w A.S. Diet [Re: tvmanjon]
Dotyisle Offline


Registered: 03/07/02
Posts: 9431
Loc: Rosario, Argentina
Originally Posted By tvmanjon
dump all of my supplements.


When I started with NSD way back in March 2002 I trialed different supplements at times and found several to cause issues with my AS.

Tim
_________________________
AS may win some battles, but I will win the war.

KONK - Keep ON Kicking

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#519607 - 05/01/19 04:24 PM Re: Current Issues w A.S. Diet [Re: tvmanjon]
Caturday Offline
New_Member

Registered: 01/29/19
Posts: 5
Originally Posted By tvmanjon
Auggie,
I have suffered with AS since I was 12 and am now 68. I went thru many alternate food trials (and other alternative treatments) and failed time after time. This last year was my worst ever. The biologics were no longer working very well. I knew between now and my end I wanted to beat this thing if possible. I bit the bullet hard. I started with Carol Sullivans book and then this forum. It has now been just about 3 months and I am finally seeing the light. My turning point was to stop ALL fluids except good water and dump all of my supplements. I tested my food and supplements religiously with iodine. I was surprised at the starch in the supplement's No more fried foods, no starch at all, no dairy, very limited carbs. It was cold turkey No coffee no tea nothing but soothing water on the gut. No nuts either. No citrus type fruits. My gut was a wreck and is just starting to heal. Its not mentioned anywhere that I have seen but use your BM to gauge your success until you see your BM whole and formed you need to do more. Read as many post here that you have time for and after awhile you will see the underlying theme get your gut better. It doesn't heal overnight. Do what ever you can do to sustain yourself on with the minimum if you want to avoid the biologics. Go to the Alternatives forum and read Duccans phototherapy story. Again if anything you can do immediately is water only the rest is poison to your gut lining at least for now.
What is BM?

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#519610 - 05/02/19 05:12 AM Re: Current Issues w A.S. Diet [Re: Auggie]
Janclebro Online   content
Member

Registered: 09/26/16
Posts: 46
Loc: Cape Town, South Africa
BM = Bowel movement

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#519616 - 05/04/19 05:49 PM Re: Current Issues w A.S. Diet [Re: Auggie]
Auggie Offline
New_Member

Registered: 12/20/17
Posts: 14
Thanks everyone for responding.
I just read thru my original posts when I first joined and realized I had not yet been dx at the time. Since then I had seen some different specialists (acupuncture, physio, & cortisone inj.). I also requested to be referred to Dr. Robert Inman, at the A.S. Clinic in Toronto, Ontario, Canada, who finally dx me with AS after confirming my + haplo hlab27 status, and finding inflammation on my MRI of my spine and hips.
My bowels have been severely inflamed over last 3 weeks so I've restricted myself to baked organic chicken (fresh fish seems to be bothering me), lettuce, and chicken broth that I make myself, and water to drink (stopped coffee, eggs, and my supplements), and olive oil. I've got an upcoming appt w my GI spec. and I'm sure he'll want to do a scope. I'll keep scanning the forums to enhance my gut healing but its frustrating. The other frustrating thing is I'm holding off on trying to get pregnant til I can get my health swung around (I can't be on the NSD or biologics when pregnant; in fact after researching, i'm not taking anything including any nsaids, which I took during my previous pregnancy after Dr assurance they were safe...). I was thinking of starting the biologic while continuing NSD and taking it for 8 months then stopping and waiting for 3 months prior to trying to get pregnant. I am concerned though that I will just have huge rebound in symptoms once I stop and increase my starch intake. There was some research specifically that suggested that if a biologic is working and you go off, then restart in future it may not work well again...I'm just frustrated. Its been over 1.5 yrs on nsd and my gut is still a mess, my disease is still active to point where I can't go back to work, and I think if I hold off on biologic, start eating more starch, and try to get pregnant (took over couple yrs first time...) plus the nine months of being pregnant, I just think it will set me back to being in a painful hell and things are not great as they are currently. I'm turning 38 this year so I don't have lots of time to deliberate. I have one child and would like one more but I don't know if I will be well enough to take care of my child while trying to get pregnant and carrying if I am disabled from pain, which is how I would describe myself prior to nsd. Just feeling like maybe its irresponsible to try for another at this point. Anyways, probably oversharing here, but I guess I just needed to vent. Still looking over posts, reviewing research, and mostly just thinking everything through. Thanks everyone.

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#519621 - 05/08/19 02:10 PM Re: Current Issues w A.S. Diet [Re: Auggie]
Dotyisle Offline


Registered: 03/07/02
Posts: 9431
Loc: Rosario, Argentina
Hello there,

Thanks for sharing, very difficult question.

Cannot offer any easy answer, you will need to do what you feel is best and you can live with. Sounds as if you have thought through this a lot already, so I wish you the best at coming to an answer.

Does your husband have any strong feelings one way or the other?

Best,

Tim
_________________________
AS may win some battles, but I will win the war.

KONK - Keep ON Kicking

Top
#519632 - 05/10/19 11:42 AM Re: Current Issues w A.S. Diet [Re: Auggie]
Auggie Offline
New_Member

Registered: 12/20/17
Posts: 14
Hi all,
Sorry for that rant above but thx Dotyisle for responding. I've talked in generalities w my partner about my concerns. I find he gets overwhelmed, finds it stressful, so I'm trying to figure it out.
On really bad days I am ready to go get my Simponi biologic and start but I just don't trust taking anything when pregnant. I keep reviewing all the research avail. on anti-tnf and Simponi (increased risks of spontaneous abortion if taking at time of conception, increased risk of congenital malformations, immune dysfunction taking biologics longer then first trimester BUT there is also research that has been done that indicates little to no difference in pregnancy and birth outcomes when taking anti-tnf, even for women taking the higher doses prescribed for inflammatory bowel disease), checking news (EU has approved Cimzia for pregnant and breastfeeding women), and looking at forums and facebook AS grps for references to this drug and pregnancy. Though there are lots of women who have taken these drugs there are some who feel that there childs' alergies, gut issues, immune function issues, etc. could be due to their taking these drugs.
I also don't trust taking homeopathic medicine when pregnant either. I keep flipping and flopping on how to handle things but what I keep coming back to is erring on the side of caution by not taking the drugs so that is probably what I will do. I know that I will feel responsible if my baby suffers from any health issues or delays if I take the drugs, though I do know its a possibility anyway, more so w my age and dx (but hopefully my suffering through without meds will result in a healthy and well baby).
The doctors (GI, Rheum) of course encourage me to take them throughout, say their safe for pregnant & breastfeeding moms, but baby & I are ultimately the ones left w the result if they are not, so... low starch rather than no starch, yoga, hot showers...
Also hopeful that the midwives here in Ontario will still follow me and deliver my baby at home like the first (I walked around the entire time in labor up to the delivery), though w my age and dx they may put me in the higher risk category where I'll need to be in hospital, but hopefully not.
Every person has to weigh the risks and benefits and decide for themselves what they can live with.
Anyway, hope all this yammering might help another who might be in my shoes at some point, even if maybe it just helps them to know others have gone through the same ponderings on these difficult issues.
Anyway, wish me well & take care (& thx to those who have provided a forum for me & others to do all this yammering :-)!

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#519635 - 05/11/19 10:06 AM Re: Current Issues w A.S. Diet [Re: Auggie]
Dotyisle Offline


Registered: 03/07/02
Posts: 9431
Loc: Rosario, Argentina
Hello Auggie,

Thanks for the update, I am not surprised regarding partners concerns... this is not the first time I have read this type of response.

Sounds like you have come to a decision. Best to you that all goes well.

Keep on Kicking.

Tim
_________________________
AS may win some battles, but I will win the war.

KONK - Keep ON Kicking

Top
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