Need help moving forward on this healing journey!

[rcchild@gpcom.net]

I've been needing to ask questions of all of you, but I always just keep trying to move forward on my own until I get to feeling slightly desperate.

Here is my story (the short version). WD started nearly 3 years ago. GP ran many good tests, found nothing, recommended specialist. I put it off for a long time because I have no confidence in doctors (my mistake). Finally gave in and saw him last May. He knew exactly what the problem was with my description, but did sigmoidoscopy (ms?) in order to do biopsies. Diagnosis LC. Would have prescribed drugs. I told him I wanted to try diet first.

In March, I started SCD - various meats, homemade meat stock, 24 hour yogurt. It felt like it was really healing and I did improve greatly - from WD 24 hours a day to a few soupy D's each morning. Did the Enterolab test and found out that I needed to give up all dairy (casein intolerance), all gluten (I've been gluten free for 30 years), soy, eggs, chicken, almonds, oats, corn.

In June I switched to the recommendations on this forum - various meats (with no chicken or eggs), homemade meat stock, rice, rice cakes, rice chex, a few potato chips, banana. I still take Synthroid and a compounded HRT called Tri-Estrogen with progesterone & testosterone. I continue to drink coffee. I drank a glass (sometimes 2) of wine each evening up until a couple of weeks ago when my body said it was time to give it up. I just felt I had stalled in my healing and had to change something. Giving up the wine did not make me any better, but now when I try even an ounce, it makes the WD very bad.

Over the summer I did feel that I was getting just a little better and for a day or two I thought I actually saw some form to the BM's (not much form but better than D). - Then it was back to D.

Do I just carry on and hope for healing eventually or is it time to try something else. I don't understand mast cells and hoped I wouldn't have to deal with it. I've never thought I had a histamine problem, but I've had a drippy nose probably since this all started 3 years ago. (Don't remember exactly when that started, but it was in that time frame.) It have improved, but isn't completely better.

We went camping this past weekend and I felt worse than ever - running to restroom, no energy. I drank one ounce of wine - maybe that will affect me for days instead of just overnight. The water we took was not what I normally drink, but other than that I did not eat or drink anything that was any different than I take in every day. Allergies ? I just have never dealt with allergies so do not know.

If any of you have any input, I would sure appreciate your help. This is just getting old! And I feel so old - at 65 I felt very young for my age, but now at 69, I'm old. Brandy posted a comment not too long ago that she felt young and strong again - Thank you Brandy for giving me hope!

Thanks in advance. You are all sooo appreciated!
Carol C

[carolm]

Hi Carol C,
Are you taking an antihistamine (Claritin, Zyrtec, etc) or steroid spray like Flonase? I have seasonal allergies and it will definitely trigger LC symptoms every year. This past year I started taking 2000 mg daily of Vit C and my allergies are much improved. Vit C helps breakdown histamine. I periodically take a supplement called GI Hist and Vit C and DAO are two of the ingredients. I take Claritin in the morning and add 50mg of Benadryl at night during the height of allergy season. I also irrigate my sinuses twice daily.

It could be that the wine sets off enough histamine reaction that when combined with seasonal allergies, it tips the scales and that’s why the D starts.

Stick with your plan, follow your Enterolab results, and be compassionate with yourself. It will get better and many parts of this journey feels like 2-3 steps forward, 1 back. If you think high-histamine foods are an issue, it might be worth limiting them for a couple of months to see if there’s an impact.

If you do take any supplements check the labels again and make sure no gluten or other allergens are sneaking their way into your system. I’ve been fooled before when I didn’t realize that d-alpha tocopherols are soy based.

Best wishes,
Carol M

[rcchild@gpcom.net]

Carol M,
I've wondered if histamine was an issue. I'm just not very knowledgeable about the subject. I will get a list of high histamine foods and stay away from them, but another concern is the meat stock. I usually freeze it in quart jars, take a quart out of the freezer and use it until gone - 3 to 5 days. I probably need to be much more careful with that. Any other issues that I might not be aware of. Since I've never really felt like I had seasonal allergy issues do you think just staying away from high histamine food will give me an idea if that's part of my problem.
I've never taken antihistamines, but would be willing to give them a try if you think that might be part of the problem.
Thank you so much. How did people cope with this danged disease before the internet??!!
Carol C

[carolm]

I agree, We are so fortunate to have this support board. The advice I received here is the whole reason that I am functional at all.

Re- Antihistamine: There are others here who have found that taking an antihistamine has been helpful to managing their LC and even felt it calmed their gut. I have always had seasonal allergies so I’ve always taken them. I know we have posts here with a list of foods that are high in histamine, but it’s also relatively easy to find on the internet. The only way to know if eliminating some high histamine foods will be helpful is to try it. So much trial and error on this path, but often it’s the only way to know what is best for you.

As far as your beef broth, the benefits may outweigh any histamine effects. It might be worthwhile to check the other foods in your diet and try Claritin first. Claritin is one of the mildest antihistamines I hear.

There is a Search option in the header at the top of this page that will allow you to search for a topic throughout the board. Click on Search and you’ll see the prompts. That’s another good way to get more info as you decide on your next steps.

C.

[carolm]

Carol C-
Here is a post by Tex as he was working through histamine issues. I found it to be helpful.

https://perskyfarms.com/phpBB2/viewtopi ... =histamine

C.

[tex]

Hi Carol C,

I agree with Carol M, so I can't add much there. Regarding the freezing of meat, it should help (histamine issues) to freeze leftovers in general. Chicken and fish are the worst at generating histamine when they're not frozen. Turkey (and most other meats) are not nearly as prone to growing histamine, when refrigerated. Nuts and nut butters tend to be at least a moderate source of histamine.

Regarding your question:

How did people cope with this danged disease before the internet??!!

I suspect that most of them had to just learn to live with the symptoms, because virtually all doctors didn't have a clue.

Tex

[carolm]

Found the list I was looking for! This is the list of high histamine foods.

https://perskyfarms.com/phpBB2/viewtopi ... mine+foods

[jessica329]

An allergist can test for environmental allergies. I recently found out that I'm highly allergic to my dog. I had no idea! But I was always stuffed up.

[rcchild@gpcom.net]

Carol M - Thank you for looking the info up for me! I think the only high histamine I've been eating are bananas regularly and avocado very rarely (and the wine in the recent past). I've been worried that I wasn't taking care of my broth as carefully as needed, if I have histamine issues, but Tex eased my mind on that. I ran out of bananas 2 days ago so will not buy more for awhile and see what happens. I may go ahead and just try the Claritin. If neither of those plans work I will just continue on with my limited diet and hope for the best.

Tex - thanks for the info. I thought all meat was involved in possible histamine so this makes things a little easier. I'm not sure there is a histamine issue, but I've been working on this diet for awhile with not much improvement lately and then have been going backward for about 1 month so will try to look at all angles.

The SCD diet talks about the 3, 6, 9 month flares. They say it takes your body about 3 months to deal with an issue and then starts dealing with the next issue. (I don't remember - maybe you say the same thing!) I'm at 7 months (if you count the time I was on SCD) so I think that could be it too. At 3 months I had to get rid of the 24 hour yogurt and at 6 months it was time to give up the wine.

I have let this get me down, but sitting here writing this is helping me see it more clearly. I'm thinking I can pick myself up one more time and carry on. I'm really tired right now and feel like I need vitamins - had liver for lunch so at least got some Vit A. I get enough B's with all the meat, but don't know how much I absorb. And of course still worried about the magnesium. I do have the Dr. Mercola vit D, but hate to take too much because it needs mag to be absorbed I believe.

Jessica - thanks for the tip. I would hate to be allergic to my pet, but I guess we all just keep figuring out how to handle whatever comes next. Good luck.

Tex - I do have one more question. I bought the revised version of your book, but have since heard that it would be beneficial to have both versions. Amazon does not have the original. Do you happen to know where I might find one?

Thank you everyone,
Carol C

[tex]

Hi Carol,

There's very little difference in the original and the revised version. The revisions were mainly corrections in links to Internet references that have changed over the years as some websites remodel their site map (IOW some of the original links no longer worked correctly), and a few research advances that I considered important. Otherwise, virtually all the basic information was unchanged.

The term "both versions" might be referring to a different book, Understanding Microscopic Colitis, which explores additional information that might be of interest to people who want more information, and for tough cases that refuse to respond to the treatments described in the first book (that was titled Microscopic Colitis).

Tex

[rcchild@gpcom.net]

Tex,
I did see that book on Amazon and plan to order it. I have 2 adult children and 6 grandchildren. I'm so afraid that some of them will end up with this nasty condition. Most all of them have significant intolerances. If nothing else, they will at least know that it is a possibility because Grandma will be trying to educate.
Knowing what I know now, I'm sure my Mom has it. She didn't talk a lot about it, just pretty much quit going out about 20 years ago. We knew she had serious digestive issues and tried to come up with helpful ideas, but she would not travel 2.5 hours to see a specialist and I had never heard of MC (or I didn't think I had).
17 years ago my 2 children each had Enterolab do a stool test and 1 grandchild had the cheek swab. When I just recently dug those results out to review the results, I find that the grandchild has the gene for celiac (which I knew) but is also predisposed to MC! 17 years ago I just overlooked that little fact because I had no idea just how important it was.
Guess we all just do the best we can at the time.
Have a good day to you all.
Carol C

[rcchild@gpcom.net]

Update:
I did not try antihistamines, but have stayed away from high histamine foods for 2 months. I don't feel that it helped me at all, but I am slowly getting better. (Guess I thought a histamine problem would get better quicker if you stayed away from high histamine foods.) I still don't have any idea why I slowly got worse in Aug. and then by Sept. it was a relapse. Am now slowly getting back to where I was before that relapse. I keep wondering if it is something to do with changing seasons - but Aug. was a little early for that.

I did try cholestryramine, but after 8 days I felt much worse and the D was different, but not better. My doctor has now sent a prescription to a compounding pharmacy for both cholestryramine and pepto bismol. (Both made me worse and I felt it was the inactive ingredients that caused the problem.) I need to decide which one to try first.

I am feeling much better at this point. Still have D, but usually only 1-2 times in the morning. Really think there is healing going on - it's just such a slow process that you sometimes think nothing is helping.

I do have one new problem and would appreciate input from any of you - My blood pressure is WAY up. It was normal about a month ago when my eye doctor checked it. Yesterday at my GPs it was 161/?. Don't remember the bottom number, but it was not out of line. Checked it a few times in the evening and it went over 200 at one point. Back to 160s this morning. I took the cholestyramine about 3 weeks ago - could that have any effect on BP. Haven't had an issue with BP since selling my tax practice 3 years ago, so this was an unpleasant surprise. Probably nutritional problem, but don't know what I can do about it at this point and GP is going to think drugs are in order when she finds that it is now consistently over 160.

Hope you are all having a great day.
Carol

[jessica329]

Are you chronically dehydrated? That can cause high blood pressure. We get a lot of our water from fruits and vegetables. So if you cut those as well as not drinking or absorbing water, that can cause an issue.

[rcchild@gpcom.net]

Jessica - yes, I'm am probably always dehydrated! I'll work on that. I always ate so many fruits and vegetables and probably kept myself hydrated that way. I tend to overlook that little fact.
Thanks,
Carol

[jessica329]

I always have homemade chicken soup for breakfast. I make a large pot of it overnight in my crockpot and then freeze 2/3. I figure it's a good way to keep myself hydrated.