I tried a different path and it didn't work out

[suzieq]

Hi all,

It's been awhile. I tried a different path, working with a nutritionist, it's been a year. Where she has guided me away from my evil ways, it did not help my CC. She told me on our last Facetime visit that she has given me all the tools and she couldn't offer anymore help. She disagreed with my Entrolab results, my food intolerances, etc., when she told me to try sourdough bread and different hard cheeses, I listened but did not comply. I'm now in a downward spiral to a flare but it is not full blown yet. My last flare was in August, after a months worth of warning signs and I finished the budesonide in the beginning of November. This current downward spiral started in the beginning of December. I feel like I am fighting it, there is a definite war going on in my intestines. I didn't get the budesonide yet from the GI, I really don't want to take it again, I have osteoporosis, but I want my belly to calm down. I've been constipated off and on and then the D started, only once or twice a day but the intestines are always going, it feels like there's a roller coaster in there.

I take a multi-vitamin, L-glutamine, D3, an allergy pill daily and psyllium, 2 a day. I was taking P 5 P Plus but stopped it thinking the magnesium might not be a good idea right now.

A new problem. I went to my primary care because the 3rd & 4th toes of my left foot alternate between numbness and pain and I have a pinching going on in my left butt cheek. He ran some bloodwork: Folates Level >24.8 ng/mL, Calculated Percent HGB A1C-5.8% (High), Est. Average Glucose-120 mg/dL (High), Vitamin B12 Level-836pg/mL. I have to go for a ultrasound of my left ankle on Friday, I believe it's for blood flow. The inital diagnosis is polyneuropathy. I think I have to also see a podiatrist to check the blood flow in my toes against blood flow in my thigh, I think that's what he said. Do any Potty People have a similar problem? I guess I'm wondering if it's a side effect of CC.


Thanks for listening and for any help/advice.


Thanks,

Susanne

[persevere]

Hi.
Sorry for your experience. Hopefully getting back on this will help.
From my point of view, gluten is just evil. Dairy is still a sly thing, alluring, but not my friend. And only small amounts of certain fiber tolerated . My daughter had a similar experience with a functional md who insisted on negative test foods. Disaster.

The pinch in buttock and numb toe: I have variations on this. Mine is sciatica.
Google sciatica and toes.. there is lots. Nerve pain can come out of your back. Something to consider.

Persevere.

[tex]

Hi Susanne,

Sorry to hear about your flare. I'm one of several here who have peripheral neuropathy. I blame it on nerve damage caused by untreated gluten sensitivity for too many years when I first got sick, combined with running low on B -12 after I had reacted for years. Mine is definitely much better after taking Metanx for years, which I replaced a few years ago with Thorne Methyl-Guard Plus.

Tex

[Gabes-Apg]

I agree with Tex's reply

hormone changes deplete active B's, namely B6 (active form is P5P)
they also deplete magnesium

I too had numbness/tingling issues in fingers and toes. This resolved once I took active B's and fixed magnesium deficiency.

the other key thing for our nervous system is zinc and Vit C. If you are having good serves of animal protein you will be getting zinc, vegetables like sweet potato and cauliflower are good sources of Vit C

hope this helps

[suzieq]

Hi Perserve,

I do follow a gf, cf, ef, sf diet and a low fodmap diet. The nutritionist was pushing fiber and I did tell her fiber is not a MC'ers friend. I only have well-cooked low fodmap veggies. I was thinking about seeing a functional MD but they don't seem to take insurance and I don't have the best insurance anyway.

The pinch in the butt cheek is slight, makes it's presence known and then it's gone in a flash. It's weird. I never thought of sciatica. I do stretches for it.


Hi Tex,

Thanks so much. I'll add the neuropathy to the growing list of what ails me lately from MC. My PCP messaged me that my bloodwork is all normal, I don't have diabetes, and will contact me after he gets the results of the ultrasound. I'll try the Thorne Methyl-Guard Plus. What dosage do you think. The bottle I read said 1-3 capsules a day.

Thanks so much,
Susanne

[suzieq]

Hi Gabes,

Thanks for your response. I'll start taking the P5P plus again, that also has magnesium in it. I'll give it a try and see if it increases the war going on in my intestines. I do eat lean chicken, a lot of lean chicken, as well as, lean beef and lean pork. I have a small portion of sweet potatoes, a larger portion is getting into the high fodmap range and cauliflower is also considered a high fodmap. I know there is C in my multi-vitamin, I will check it out.

Thanks again,

Susanne

[Gabes-Apg]

Suzie,
please read through this recent thread started by Erica, I have put some links etc in there that are relevant to your situation
https://perskyfarms.com/phpBB2/viewtopic.php?t=24405

and one a bit later by Tex on the same subject
https://perskyfarms.com/phpBB2/viewtopic.php?t=24414

I am not a doctor but quite a few of your current issues are resolvable via taking the right nutrients. (and adjusting the eating plan back to low inflammation MC safe options)

[tex]

Susanne,

Regarding the dosage: If you're going to take Methyl-Guard Plus, I've always just taken 1 capsule per day. Diabetics might need to take more. If you're going to use regular Methyl-Guard, you might need two capsules because it's much less potent than the Plus version.

Tex

[suzieq]

Hi,

Gabs, I read the links that you sent, I didn't understand some of it but here are my thoughts. I moved in the spring 2015 from New Jersey to North Carolina and just recently moved a little further south to South Carolina. My seasonal allergies are definitely worse here in the south. I had been in remission for 15 months before moving south and things started going "south" about 3 months after the move and have had many flares since that time, treated with budesonide. Stress - I felt stressed because I really don't like it here but I have been dealing with that, I'm retired, and I have 2 kids in their 30's in Manhattan that I constantly worry about. I find my flares seem to be the same time of the year. Because of my allergies I take an antihistamine daily. The nutritionist had me add some prebiotics that probably weren't a good idea. Sauerkraut, artichokes, kombucha to name a few and I think they are high histamine foods. I plan to go over my diet with a fine toothed comb and narrow down which low fodmap foods are low histamine foods and of course gf, ef, cf and sf and plan my diet accordingly. I ordered zinc/copper supplement, vitamin C and Thorne Methyl Guard Plus. I started the P5P again along with a low dose magnesium supplement. Any thoughts about continuing on psyllium?

Thanks so much for everything!

Thanks,
Susanne

[tex]

The use of psyllium is probably a personal choice, depending on how your body responds to it. It may be harmful during a flare, because of the abrasiveness, but some people insist that it at least gives some body to their stool.

Tex

[dolson]

Susanne, I have the same problem. My spasms and foot pain are caused from Type 1 diabetes, to the best of my knowledge. I get severe cramps in my feet and legs. I take two potassium supplements and the pain and spasms vanish. Vitamin K or potassium work fast! No doctor informed me of this; I talked to another diabetic woman who complained of spasms and pain in her toes and feet and she praised potassium for relief of her condition! MC could be a player also, but I don't worry because potassium renders relief FAST! My husband, a non-diabetic uses potassium for pain and spasms and it works for him. You may want to give it a try. Good Luck. Dorothy

[TM]

Hi Susanne,
I saw a nutritionist (once) and began a Low FODMAP diet shortly before being diagnosed with CC in 5/2016. It helped at first and then not so much. I kept at it for months but kept losing weight, etc. In 2/2017 as a last ditch effort to avoid Budesonide, I decided to do the EnteroLab tests and try the basic diet recommended here. I began to improve and believe one of the keys (for me) was eliminating high histamine foods. I could feel the “intestinal war” begin to diminish immediately. And when I later added antihistamines there was additional improvement in other areas—GERD, respiratory, skin, headaches, etc. Now I’ve been prescribed Cromolyn Sodium—a mast cell stabilizer and am hoping it will allow me to broaden my food choices. Sounds like you may have histamine/mast cell issues too, so I imagine the prebiotics were torture. There’s been an explosion of research on mast cells in just the last few years, and they’ve been linked to a surprising number and variety of issues, including osteoporosis. I was diagnosed at age 53 (now 69) and told that was considered young for “age-related” osteoporosis—but I’d already lost an inch by then. Do you take any osteoporosis meds (other than K-2)?

The lab results you cited were very similar to mine—my baseline B-12 and folate levels were even higher, and my average daily glucose and A1C are generally just a little lower. Since you’re already near the top of the range for B-12 you might want to keep an eye on B-12 and folate levels if you start Methyl Guard or M/G plus. My levels skyrocketed after M/G+ and Gabes recently advised to just stick with P-5-P and forget the other B’s.

I too have ankle (and other joint) pain, and persistent numbness and pain in several toes—which I worry might be affecting my balance. Earlier this year I experienced similar issues in my right shoulder, arm, wrist and thumb. Rather than imaging or blood tests, they measured nerve conductivity. Not very helpful though—just confirmed carpal tunnel—but it might be helpful in your situation. I think most if not all of these (and a long list of my other Dx’s) are related to mast cells, rather than stemming from CC.

Perhaps most importantly though, it sounds like your move from NE to SE has been stressful on multiple levels. As you know stress/anxiety—particularly when prolonged—can derail any progress you’re making in other areas. Unfortunately there are no shortcuts or easy answers. Just have to keep at it, trying to make sense of it all, as best you can.

Hope some of this has been helpful. I’d encourage you to look into possible mast cell/histamine issues and can point you to some sources if you’re interested. Hope you’re able to find some relief soon.
Teri
PS—10+ years ago I was seeing a Naturopath, who among other digestive remedies prescribed l-glutamine. I tried it for awhile and didn’t notice any improvement, but kept thinking: this feels weird—kinda like an MSG (to which I’m very sensitive) reaction. Noting the name similarity I asked about a possible connection but was told: not likely—at least no one had ever mentioned this type of reaction before. Do you find that it helps or notice anything unusual about it?

[TM]

Dorothy and Susanne,
In the “we’re all different department,” I’ve been taking Rx Potassium since 2010, and it has not helped at all with debilitating muscle cramps. For continuing relief I’ve had to also take 1,000 to 1,400 mg of Mag Glycinate daily. For years I also took megadoses of Vitamin K2 (MK4) and later added MK7. These neither helped with cramps or improved my bone density. I stopped them when I also discontinued most other supplements.
Teri

[brandy]

Sato's research on K-2 has recently been debunked as fraud

https://www.sciencemag.org/news/2018/08 ... xposed-him

[Greengoddess]

For the tingling or pain I take Thorne Methyl Guard Plus once a day