A Newbie Finding Her Way

[Harmony33]

Hello Fellow MC’ers,

I wanted to thank Tex and each of you for this support group.

I have just been diagnosed with MC. Your forum and Tex’s books have been invaluable. Luckily I found this forum quickly and have spent hours reading posts to process the complexity of this disease.

Thanks to your posts, I have already completed the Enterolab testing, added magnesium and increased vitamin D. I have started a strict diet based on the lab results and eliminated foods I had previously noticed caused intermittent morning issues over about the past four years. After eight weeks of constant WD, I was diagnosed, started Budesonide and have been symptom-free for three weeks. I am wrapping my head around the fact that this is not a cure, just temporary relief. I am just now beginning to understand that this will be a lifetime battle.

I may not post very often, but I will be an avid reader.

Thank you all!

[Janie]

Welcome I still consider myself a newbie even though I have been here since 2016. I learn new things everyday. I rely on Tex, Gabes and Erica along with everyone else. I learned some valuable information from Patricia on here yesterday.
Keep on reading and no question is stupid so ask away when you need too.

[tex]

Hi,

Welcome to the group, and thank you for posting your current status. You're obviously a self-starter, and you appear to be off to a great start. Yes, this disease is a life-changer, but by taking control as you have, you'll be in charge, rather than letting the disease control your life. And with any luck at all, you should be able to keep the disease in remission by diet alone in the long run.

Again, welcome aboard, and if/when you have any questions, please feel free to ask anything. Best of luck to you as you continue your recovery journey.

Tex

[dottydog1959]

Hi
Raynauds disease is associated with hypomagnesaemia according to Dr Carolyn Dean in her book The Magnesium Miracle. Apparently Mg reduces the muscle spasm in the small arteries which cause numbness and pain. I have only been applying topical Mg for a few weeks and my Raynauds is much less pronounced even in our current snowy weather. Plus lots of other positive changes which I attribute to the Mg.
Best wishes from a fellow newbie.

[dottydog1959]

Actually I should have said magnesium deficiency rather than hypomagnesaemia since serum Mg is rarely low even in those who are deficient.

[dottydog1959]

Actually I should have said magnesium deficiency rather than hypomagnesaemia since serum Mg is rarely low even in those who are deficient.

[Harmony33]

Thank you for your welcome and suggestions. I have started D3 and magnesium spray so am glad to know that could help with Raynauds as well.

I have some questions about my menu after my Enterolab results. I do know I am fortunate overall after reading other’s results.


Enterolab Results

Microscopic Fecal Fat Score    Less than 300 Units   
(Normal Range is less than 300 Units)

Fecal Anti-gliadin IgA      16 Units   
(Normal Range is less than 10 Units)

Fecal Anti-Oat IgA      14.0 Units   
(Normal Range is less than 10 Units)

Fecal Anti-tissue Transglutaminase IgA      2 Units   
(Normal Range is less than 10 Units)

Fecal Anti-Saccharomyces cerevisiae (dietary yeast) IgA 1 Units   
(Normal Range is less than 10 Units)

Mean Value # Antigenic Foods      10 Units   
(Normal Range is less than 10 Units)

Mean Value 11 Antigenic Foods      10 Units
(Normal Range is less than 10 Units)

Mean Value 4 Antigenic (Meat) Panel 14 Units
(Normal Range is less than 10 Units)

Food to which there is no immunological reactivity:
Milk, soy, corn, cashew, white potato, garbanzo bean, sesame seed

Food to which there is some immunological reactivity +1:
Rice, walnut, almond, egg, chicken, pork, beef, tuna

Food to which there is significant immunological reactivity +2 or +3:
None



I did the full gluten + vegetarian panel first as I wanted to know about sesame and was not too concerned about meat. Based on the first results, I stopped my daily oatmeal, which I had been eating because it is bland and I don’t really care for rice, which I now can’t have either. Then I did the separate meat panel to see if I could have tuna, which I had suspected might be a problem and was shocked to have a +1 to all four—tuna, beef, pork and chicken!

My current menu is either corn Chex or half a banana and cashew butter for breakfast. Lunch and dinner are either the bone broth soup from Gabe’s stage one menu or local grass fed beef or pork with potatoes, soft green beans or avocado. I gave up coffee with milk and just drink hot herbal tea. I don’t eat out unless I have to. Sad and boring, but I’m trying to heal!


Here are my questions:

* Can I add milk, soy, corn, cashew, white potato, garbanzo bean/legumes and sesame to extend my healing diet as I know I don’t react?

* Both this forum and Dr Fine’s descriptions at the end of the Enterolab results said not to change everything at once, but drop the +3, first then +2, then +1. Does that mean I should continue the beef and pork as they are good protein?

* Can I add an egg as it is a +1? Alone or just in other food?

* Can I have cheese as my results show no sensitivity to milk protein?

Any other suggestions? I am so new to this that I am actually afraid to eat. I am especially concerned as I finish my Budesonide course this Sunday. (I have read many of the Budesonide threads and have added an antihistamine, just in case.)

Thanks!

[tex]

Here are my questions:

The following statements are strictly my opinion, based on the accumulated experiences of members here over the years.

* Can I add milk, soy, corn, cashew, white potato, garbanzo bean/legumes and sesame to extend my healing diet as I know I don’t react?

Presumably they should be safe, but I would try them one at a time in case you react to any of them. Be aware that everyone is lactose intolerant when their intestines are inflamed. That means that small amounts may be ok, but large amounts may cause problems because you may not be able to produce enough lactase enzyme to completely digest larger amounts as long as your intestines contain some inflammation.

* Both this forum and Dr Fine’s descriptions at the end of the Enterolab results said not to change everything at once, but drop the +3, first then +2, then +1. Does that mean I should continue the beef and pork as they are good protein?

With an overall score of 10, the 1+ items may or may not be a problem. They should at least be safe on a rotational basis — that is, if you don't eat the same ones every day. But they might be OK more frequently (because of the 10 overall score).

* Can I add an egg as it is a +1? Alone or just in other food?

I would try these foods, one at a time, and keep notes (a food-reaction journal), so that you can catch the problem if there is one.

* Can I have cheese as my results show no sensitivity to milk protein?

Hard (aged) cheeses should be OK as they are low-lactose. Soft cheeses might be a problem, especially larger servings (due to the higher lactose content).

Any other suggestions? I am so new to this that I am actually afraid to eat. I am especially concerned as I finish my Budesonide course this Sunday. (I have read many of the Budesonide threads and have added an antihistamine, just in case.)

It takes the diet a while to heal the gut, so it's not going to be able to take over to maintain remission if you stop budesonide in a few days after starting the diet. Figure a minimum of six weeks to six months time for the diet to stop the inflammation sufficiently to achieve or maintain remission. We're all different and we all require our own healing time.

I hope this helps.

Tex

[brandy]

Hi Harmony,

Welcome!

Can I add milk, soy, corn, cashew, white potato, garbanzo bean/legumes and sesame to extend my healing diet as I know I don’t react?

Of your list white potato is probably most gentle on the gut, i.e. most of us can tolerate white potato.

I'll comment specifically on corn, cashew, and garbanzo bean/legumes:

Be aware that corn can be tough for even non MCers to digest. If you can't tolerate it now after testing you may be able to tolerate it down the road with further healing. I seem to be ok with corn flour in GF products but I have not tested
"corn" in awhile.

Cashews--soak them before testing. Google soaking nuts. This will make them more digestible. Again
if you can't tolerate them now you probably can in the future. Cashews can also be blendered if you like.

Garbanzo beans/legumes--I can eat these now. I don't think I could tolerate them early on.
They have a lot of fiber which is tough for us. IF you test them try rinsed canned and then blender, i.e
like hummus consisitency. THis will make them easier to digest. If you use beans that have to be soaked
I'd soak and rinse for 24 hours and them blender them for your test, i.e. oversoak them. As a reference I'm probably ok
with 1/2 cup legumes say 3-4 times per week.

[brandy]

Hi Harmony,

To clarify--the categories of corn, nuts and legumes are foods that are just physically tougher to digest if that makes sense.
You'll have to test them to see how you do but I'd recommend my procedures above. If you can't tolerate them now
I'd retest in 4-6 months or so.

I'm in remission and I can tolerate all of them but corn is an unknown for me other than corn flour which I can tolerate.

[Harmony33]

Hello Helpful Guides,

Thank you all for your advice and posts as I try to negotiate MC. You are very kind, very helpful guides.

After only two days of Budesonide, I no longer saw WC (Actually my prescription was 30 days of 9mg with no taper, which I now understand is not the typical dosage, but that is for another discussion, depending on how this goes.) I now have MC mud or very soft in the mornings with no urgency, which is at least an improvement. I see from forum posts that this is not unusual.

My new issue is magnesium supplements, which I started as you all recommend, but also to reduce leg cramps and tinnitus. I decided to try the Ancient Minerals Topical Spray to not even chance losing this tentative remission. 6 sprays = 55mg, so I started with 12 sprays on my legs. For the first two weeks all went well, so gradually increased to 24 sprays, which is still under the recommended daily dosage. But now I get bright red patches of rash (not hives) wherever I spray.

I read Gabes posts and tried spreading the sprays over different times of day and different parts of the body, but still get the rash.

Could I actually be allergic to magnesium?

For the lowest chance of D, should I try an oral magnesium glycinate or the ReMag instead of or in addition to the sprays?

Your experiences would be very helpful.

Thank you!

[tex]

I'll bet there's something in there besides magnesium. You might try another brand, but if it causes a rash, I would stop using it. You may be able to get away with 200–300 MG of magnesium glycinate (2–3 tablets of Dr's Best brand), spread out as 1 tablet with each meal. ReMag is mighty potent.

Tex

[Harmony33]

You are right, Tex.

I didn’t realize there were two versions of Ancient Minerals. I happened to buy the Ultra, which also has methylsolfonymethane (OptiMSM) and elemental sulphur. I will try the Dr Best brand magnesium glycinate next.

Thank you Tex and Gabes and Dottie and Brandy and all the moderators for your patient responses to each of us newbies asking the same questions as we try to find our own way.

[Harmony33]

Most of us will relate to this article about living with a chronic illness:

https://www.nytimes.com/2019/02/18/smar ... e-ibd.html

[Harmony33]

Update: I am five weeks post-Budesonide and in recovery (remission?) I am just now starting to introduce simple foods VERY slowly, mostly from the low inflammatory FODMAP list to give myself a lower chance of reaction. Norman has not yet come to visit, but I think non-urgent morning “soft-serve” (as Brandy describes) may be acceptable in my new life with MC.

I had one bad evening of WD a couple of weeks ago and panicked to think I might have to start all over. I had tested tomatoes a few days earlier, which was probably not smart, but I missed them. I checked my diary and the only other possibility is that I had stopped the post-Budesonide antihistimine, thinking I had used it long enough. I took an antihistime and was better. So I guess I will take it for a few more weeks, then test without again.

I credit this forum for my recovery due to changing my diet and adding D3 and magnesium. Ten minutes every two months with my PCP or GI does not answer enough questions. Hours of reading your posts, struggles, questions and solutions has given me a clear path to follow on this frustrating MC journey.

Thank you!