Autoimmune and methods for gut heal please share stories

Posted by abhishek80 @abhishek80, Jun 12, 2023

What are strategies for gut healing and have they helped ?

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@klpatrick

I am a concerned parent of my son B-rad. He looks healthy except when he balloons out with swelling and hives. He had just started a new job and was put on medical leave due to the swelling and hives.

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I had huge outbreaks/inflammation/swelling of lips, ears, eyes, mouth area and all different parts of my body. I went to ER 2x bc inside throat swelled slowly. I was finally dx by a 2nd biopsy I had pink (not always pink) flat, smooth but swollen areas. 1st biopsy w/ 1 dermatologist (maybe not taken correctly or tested correctly) didn't show anything. 2nd biopsy taken by a Stanford derm, was identified as urticarial vasculitis. I had previously gone to many dermatologists, allergist/immunologists/, but they all missed the mark. Then I went to rheumatologists who wanted to give me so many drugs. I stick with one derm at Stanford who has guided me ever since I suppose I am very fortunate and that Xolair has worked for me.

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@covidstinks2023

dahk, With you being a functional medicine coach, I take it that you want to go the natural route. I truly respect that. I know that what you have is much worse than my issue, but, maybe something I hit upon with you will help. I tried everything natural for IBS-C (IBS constipation) and nothing worked. Fodmap diet, eating clean (actually made it worse!), gluten free (no change), can't do much natural fiber such as Psyllium & flaxseed, drinking more water, moving more, Kefir, very good probiotics, prune juice, Miralax (trial & error with dosage) etc., Iceberg lettuce is one of my worst culbrits and the preservatives added to salad bars cause severe cramping. Only occasionally do I need to take Milk of Magnesia. I went on Linzess 72 mcg for IBS-C several years and it is the best thing I ever did! I take Bentyl for IBS for colon spasms...works wonders. I realize this is not what you have been diagnosed with, but, just some thoughts. I empathize. It's miserable. Go figure, but sometimes eating occasional junk from a fastfood restaurant helps! I truly wonder if there is a genetic connection as my mom & sister have IBS-C as well. I'm hopeful you will get better and find what works for you. Bless you!

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I don't see my reply to you so maybe I hadn't send it. I welcome your experience. I have taken Linzess 290 mg 3 nights in a row w/ no result, as of now. You reminded me that I used to go when I had sugary junk foods which I don't consume anymore. Also what was terrible but made me go was sugar free (candy or chocolate). That would give copious amounts of gas, too. I'm wondering if my colon is dried out and doesn't retain fluid. My doc. tells me to use more than 3 caps of Miralax daily. I haven't 4 caps consistently bc it just seems too much and if 2 caps don't work, is 4 better? Maybe I will try Milk of Mg. I take Colazol when I have spasms (not too frequently). I would really like to find a healthy way of eating bc I get addicted to junk food if I eat it, so I don't want to.

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@klpatrick

These are the hives that come and go. They move, they change positions.. very scary for him and his new wife..

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Very much like what I had and dx as Urticarial Vasculitis.

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@dahk

I don't see my reply to you so maybe I hadn't send it. I welcome your experience. I have taken Linzess 290 mg 3 nights in a row w/ no result, as of now. You reminded me that I used to go when I had sugary junk foods which I don't consume anymore. Also what was terrible but made me go was sugar free (candy or chocolate). That would give copious amounts of gas, too. I'm wondering if my colon is dried out and doesn't retain fluid. My doc. tells me to use more than 3 caps of Miralax daily. I haven't 4 caps consistently bc it just seems too much and if 2 caps don't work, is 4 better? Maybe I will try Milk of Mg. I take Colazol when I have spasms (not too frequently). I would really like to find a healthy way of eating bc I get addicted to junk food if I eat it, so I don't want to.

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dahk, It is so hard to get a balance with Miralax isn't it? If your doctor tells you to use more than 4 caps, then personally I would try it. BUT, you have to drink a lot of water along with Miralax to get it to work. Miralax works slow and I found it took time to get the right balance for sure. I agree about the junk food. It taste so good and is so addictive....like sugar is. Who can eat 1 Hershey kiss? LOL. Personally, I would try the sugar free candy again and just eat less than you did before and see if that helps. York Peppermint Patties has a zero sugar one out now that I put in the freezer. They are delicious. I can only find them on Amazon Fresh. I do not know the maximum dosage on the Linzess. I would ask my doctor about that. Do you take Magnesium 200 mg during the day? That helps with constipation, relaxes yours muscles and lowers BP. This is the same thing that is in M.OM. (Milk of Magnesia)...Magnesium. I personally would not take the magnesium and Linzess at the same time. Add one thing at a time and then you will know what is working. Is it hard for you to relax? If so, do things that help you relax. No doubt, tension & stress add to constipation. I hope some of these things work. God Bless You!

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@dahk

Were the symptoms obvious when you reintroduced the foods?

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@dahk yes, unfortunately, symptoms were obvious and many were neurological- and instant. I went from eating dairy to not even being able to touch butter, at first, and when I made hot chocolate the milk in the steam affected my lungs. So it wasn't even just ingestion. The sensitivity has declined over many years but I still don't eat dairy. In my case, the issue is casein, the milk protein.

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May I ask what gut issues are you referring too? Bless You!

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@covidstinks2023

dahk, It is so hard to get a balance with Miralax isn't it? If your doctor tells you to use more than 4 caps, then personally I would try it. BUT, you have to drink a lot of water along with Miralax to get it to work. Miralax works slow and I found it took time to get the right balance for sure. I agree about the junk food. It taste so good and is so addictive....like sugar is. Who can eat 1 Hershey kiss? LOL. Personally, I would try the sugar free candy again and just eat less than you did before and see if that helps. York Peppermint Patties has a zero sugar one out now that I put in the freezer. They are delicious. I can only find them on Amazon Fresh. I do not know the maximum dosage on the Linzess. I would ask my doctor about that. Do you take Magnesium 200 mg during the day? That helps with constipation, relaxes yours muscles and lowers BP. This is the same thing that is in M.OM. (Milk of Magnesia)...Magnesium. I personally would not take the magnesium and Linzess at the same time. Add one thing at a time and then you will know what is working. Is it hard for you to relax? If so, do things that help you relax. No doubt, tension & stress add to constipation. I hope some of these things work. God Bless You!

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Thank you. I don't want to add artificial sweeteners into my system. From all the studies I've read, there's nothing benign about them. I did write to my GI doc today for direction. I don't feel too stressed, but I can always add more meditation/relaxation practices to my day. And, I'm not taking Magnesium, so I will try that after I check w/ my functional medicine doc. It's been on my list. I would like to add it when I introduce foods, 1 by 1 back into my diet. I am concerned that the BP medication I take and the immunologic might be drying out my colon and I am consuming caffeine, but not in coffee, in order to function throughout the day. I haven't used MOM before. I wonder what my doc will suggest.

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@windyshores

@dahk yes, unfortunately, symptoms were obvious and many were neurological- and instant. I went from eating dairy to not even being able to touch butter, at first, and when I made hot chocolate the milk in the steam affected my lungs. So it wasn't even just ingestion. The sensitivity has declined over many years but I still don't eat dairy. In my case, the issue is casein, the milk protein.

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I think the 1st food I’ll introduce will be Kiwi fruit.

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@covidstinks2023

dahk, It is so hard to get a balance with Miralax isn't it? If your doctor tells you to use more than 4 caps, then personally I would try it. BUT, you have to drink a lot of water along with Miralax to get it to work. Miralax works slow and I found it took time to get the right balance for sure. I agree about the junk food. It taste so good and is so addictive....like sugar is. Who can eat 1 Hershey kiss? LOL. Personally, I would try the sugar free candy again and just eat less than you did before and see if that helps. York Peppermint Patties has a zero sugar one out now that I put in the freezer. They are delicious. I can only find them on Amazon Fresh. I do not know the maximum dosage on the Linzess. I would ask my doctor about that. Do you take Magnesium 200 mg during the day? That helps with constipation, relaxes yours muscles and lowers BP. This is the same thing that is in M.OM. (Milk of Magnesia)...Magnesium. I personally would not take the magnesium and Linzess at the same time. Add one thing at a time and then you will know what is working. Is it hard for you to relax? If so, do things that help you relax. No doubt, tension & stress add to constipation. I hope some of these things work. God Bless You!

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My doc just responded to my question. He said there’s no limit to miralax so up the dose. He also said try an enema or suppository.

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@dahk

My doc just responded to my question. He said there’s no limit to miralax so up the dose. He also said try an enema or suppository.

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dahk, Good advice from your doctor. Pears are high in fiber in the skin of the pear and are also good for constipation. Also, have you tried a stool softener such as Colace? There is a generic for them and you can ask your pharmacist. I believe you can take 1-3 a day. Check the label on this. Also, figs & prunes are good for some people. There is a prune tea that I saw mentioned on this site. Blessings...P.S. I do not think the York Peppermint Patties have aspartame in them, perhaps stevia or splenda.

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