Help with nearly reaching full remission please?

[Gabes-Apg]

Nuts are a high fibre type item and hard for the body to digest -
are you eating whole raw nuts? even after years of reasonably stable remission even small quantity of crushed nuts will cause a change in my poop.

my learnings and observation over the wellness journey, for long term wellness it is best to avoid grains.
there is more nutritional value in cooked vegetables etc
current day grains are not the same as the product we purchased 15 years ago. they are genetically modified have high levels of chemicals, and production methods and storage are aimed at low cost instead of providing quality product.

[cloud9er]

Hi guys,

Sorry for the delay it has been a busy week!

My soya score was 8, egg was the same. I assume because I’ve not eaten them for so long. Will I be ok with legumes? I will continue to avoid the big four.

I’m still eating corn and seem to be ok. I will try reintroducing rice. I’ve tried raw nuts and my body doesn’t like them :( I’ve been trialling pure peanut butter once a week and I’m not sure about them yet.

A big change since the last time I posted earlier in the year is that I’ve cut out all oils other than Rapeseed, so no olive or sunflower oil and it’s made a big difference so that may help someone on here.

I think I have a problem with pure coconut milk etc, the watered down ones seem ok. Baking has been difficult but I might just need to remove items that could be causing a problem. I can send a link for a recipe book that uses alternative flours if that will help some people. The flours they use are sorghum, quinoa, teff, millet, and arrowroot starch.

Still no luck with eating tomatoes regularly which I am gutted about! I have tried lamb, duck and venison with mixed results. Mince still seems to cause an issue and I think it is any type of mince but pork especially

Do you think I will be ok continuing with rice and corn?

Thanks for reading and replying!

Amy

[tex]

Hello Amy,

If your EnteroLab results are accurate, and you're not sensitive to soy, then legumes shouldn't cause any problems. Based on your test results, rice shouldn't cause any problems, but corn might. Since your clinical symptoms don't appear to be a very good match for your test results, I'm wondering if your immune system is capable of producing a normal level of Immunoglobulin A. The reason I'm questioning your test results is because you mentioned that pork is a problem, and yet your test results indicate that it shouldn't be. You said that corn seems to work better than rice, but that doesn't seem to match your results. Have you ever been tested for selective IgA deficiency? If you have selective IgA deficiency, the EnteroLab test results will all be low, and even tests such as the celiac screening blood test that doctors use, won't work properly.in other words selective IgA deficiency tends to cause possible false negative results on ELISA lab tests. About one in 500 people in the general population have selective IgA deficiency, but among celiacs and MC patients, the ratio is one in 300.

Tex

[cloud9er]

Dear Tex,

I had a blood test for IgG, IgM and IgA in May but they all came back normal. My GP tested them because of the lump in my neck. I’m going for a ultrasound scan for tomorrow by the way.

Amy

[cloud9er]

Dear Tex,

Another factor with rice, is that most rice milks also contain sunflower oil which is a problem for me! I still have some of Rude Health’s tiger nut milk which is mostly rice milk with 6% tiger nuts. I may try the Nestle rice crispies again if not pure rice. Other pork cuts seem fine, ie chops, steaks and belly. I’ll keep plodding on and if I see any changes I’ll report back my results.

Thank you.

Amy

[tex]

For what it's worth, rice milk is not gluten-free. The processing of rice milk involves a malting process that's started with barley malt. The manufacturers claim that the gluten from barley is filtered out before the product is sold. But that only means that the maximum amount of gluten in the product is below 20 ppm. When I was recovering, I couldn't tolerate rice milk for that reason, because some of us react to products that contain a legal limit of gluten. By contrast, Australia allows only 5 ppm for their gluten limit, and that rarely causes problems for celiacs and anyone else sensitive to gluten.

But getting back to the barley malt problem, the problem here is that the labeling law specifies an upper limit on gluten content, but although barley causes us to react, barley doesn't contain gluten. The corresponding prolamin protein in barley is hordein. Consequently, there may be some smoke and mirrors involved with this product because it only has to pass the gluten specs in order to be legally sold. At any rate, once I eliminated rice milk from my diet, I did better.

Tex

[cloud9er]

Hello, just an update for you. I think I put myself back some weeks or months by trying nuts, rice and a couple other things (baking included).
There have been a few episodes where I have a full day of fatigue, nausea, cramping pain in back and side but not necessarily all together. Although colds and a bug have gone round the UK.

My sugar intake crept up too. For a long time now I tend to bloat after every meal, I burp a lot and sometimes have hiccups too. My bowel movements are mostly normal, more on the loose side.

Recently in the last week, I’ve cut out 1/2 to 3/4 the amount of sugar I would have in a day. This is because I’ve noticed yellow patches on my tongue. Following the reduction in sugar, initially I had yellow diarrhoea for a couple of days but now my bowel movements seem normal.

I have allowed myself 15 ml of fruit cordial or 1/2 tsp of honey in a day, otherwise my sugar intake is from corn cereal in the morning, Vita coconut milk (which is mostly water) and starchy vegetables (carrots, parsnips or potatoes).

I’m having almond milk now, I introduced it a couple of weeks ago, I seem ok with it. I’m having most meats now except beef. Not quite so sure about rice. I’ve adding coconut oil to my diet, and a little bit of cinnamon with almond milk is a delicious drink with limited sugars and carbs.

My problem is that in trying to eliminate possible bacteria overgrowth, I’m getting stuck as to how I can change my diet. The cereal can be changed to reheated leftovers or soup. I travel a lot for work and I struggle with cold food ideas! I already have cold potatoes with meat. I could have rice if I find it is indeed ok. I will try about smoked salmon with asparagus and avocado. Then I’m stumped

My tongue has slight white patches now. I’ve been too tired to run once a week, so it has slipped to every fortnight.

Thanks for reading
Amy

[cloud9er]

Also, I’ve just noticed in another post medication was mentioned. I take the combined contraceptive pill which unfortunately contains lactose. I need to continue taking it for PCOS

[Gabes-Apg]

as a chronic PCOS sufferer, I understand the dilemma of dealing with multiple issues
for the PCOS, resolving zinc and magnesium deficiency helped this ALOT.

contraception pills will deplete magnesium and active B's - if you can increase magnesium intake (either orally or topically) and take some good active B's this will help.

right now I can understand that your focus is the gut, keep in mind that the contraception pill is a bandaid for the PCOS, its not helping root cause. It will mask main symptoms but as it is an endocrine issue - the pill won't help with sugar regulation etc.

interestingly for functional approach to PCOS - is similar to what we recommend for MC
Low inflammation diet (no dairy), Vit D, Magnesium, zinc, good animal protein
I have found that B3, B5 and B7 have been very beneficial.

[cloud9er]

Thank you for your advice Gabes! I appreciate the advice :) I will try adding in a b vitamins supplement.

By the way, I’m hoping to start IVF in the next 6 months. The ivf consultant will ask me to come off of the pill for at least a month before egg collection. I’m a little concerned about FSH doses potentially causing a flare. I will ask my gastro at the least to run tests before a pregnancy, I’m sure they will want to anyway.

I’m rather disheartened this evening as I’m experiencing nausea and fatigue again today even though I haven’t eating anything I shouldn’t be. I haven’t been to the toilet today either. I’ve been on such a restricted diet now since January, I really thought I’d be able to add something in to my diet. Not sure if the red meat is causing problems. I’ve had pork several days in a row, I wonder if I should remove it for a few weeks.

Another problem coming up is that we should hopefully be travelling to New Zealand in April/May depending on if they open their borders. I’ve already said that one day travelling can be anxious filling and disruptive! I have a wedding to attend next weekend. I’ve not searched the forum for mental health yet but I really struggle watching everyone around me be able to eat normally, though it is getting easier.

Sorry for being emotional. Take care everyone.

Amy

[cloud9er]

Hello all,

I’ve returned to the forum as I’m currently flaring caused by burnout from life and also stress from planning our wedding at the end of August. We are no longer pursuing ivf but I’m hoping to get pregnant in the next year or two…

I’ve been put on a low dose of propranolol, a beta blocker, to help the gut-brain axis. Also I’m retaking mufaflor. It’s been a week tomorrow but still no improvement with diarrhoea around 5-8 times a day, wakes me up in the night too

My diet improved slightly since my last post, I added in some more vegetables and found that fibre actually helped my bowel movements. I did briefly have an upset tummy in February which was probably food induced, partly put of my control as we went away for a weekend. I told the hotel of all my dietary restrictions. I’ve now been flaring for two weeks and reducing my diet for damage control hasn’t helped so far!

I’m feeling rather depressed as I thought my diet was restricted enough as it was and I’m fed up with peeing out of my bum 5+ times a day :( I’ve cut out alcohol too which wasn’t frequent anyway. Fatigue has come back although tiredness was always there. I caught covid in late November and stopped jogging, haven’t been able to get back in to it successfully. I have constant eczema on my hands, also have anxiety and ADHD but see a therapist every fortnight.

Thank you for this venting outlet.

Hope you are all well.

Amy

[HockeyMom]

Hey Amy-
I haven’t read all your posts, sorry! Maybe you should try cholestyramine ? Diet didn’t do it for me. Massive amounts of cholestyramine, Betaine HCl and digestive enzymes and magnesium are what work...message me if you want.

Laine

[Gabes-Apg]

Amy
agree with Laines suggestion

Cholestrayamine is a great way to reduce the stress of watery D

additionally the eczema and other symptoms are indicators that you may need more Vit D and magnesium
have you tested your Vit D levels since you had covid?

given the stress, covid etc, I would also consider helping the immune system with Vit C (good food grade type not cheap one) Zinc.
there have been many studies about Vit C, zinc, Vit D and magnesium and covid etc.

a good starting point for all the current issues, magnesium foot soak each night. 10 mins, sit quietly, do breathing exercises while you soak your feet.
also keep in mind that there is no quick fix for all of this, to enjoy your wedding in august, doing some good routines now will help

[cloud9er]

Dear Laines and Gabes,

Thank you for your replies! Sorry for the delay in replying also.

I used to take cholyestramine years ago when I was being seen by the NHS as I had a positive Sehcat test. I wouldn’t say that I was symptom free taking it. My current gastro tested and diagnosed me with LC, they think diet is the best way to control the disease. I felt like cholyestramine was curing the symptoms and not the cause personally, plus I hated taking it! Also caused my good cholesterol to be higher than normal. Regarding the stomach, I was initially found to have minor inflammation so was put on medication to reduce acid.

The beta blockers are helping me stay calm, I’ve made a couple of changes to relax. I’m already taking vitamin D supplements, B12 and Osteocare (also contains zinc). I have baths with salt in (for the magnesium). The NHS won’t test my vitamins because of Covid, the private gastro might at a push. I’ve now been put on an 8 week course of Budesonide, almost a week in and the diarrhoea hasn’t stopped but it is no longer waking me up at night.

It’s Jubilee weekend here and I’m still feeling really low, it sucks to not be able to eat and drink for socialising. The tiredness/fatigue not letting me celebrate like everyone else isn’t helping but I’m hoping I will get there.

Are many youngsters (kind of ) like me having to stick to a very limited diet for years??

Also I don’t have time/not organised enough because of the ADHD/don’t like the taste of reheated casseroles and stews. In the UK we deem it a no no to reheat rice and pork.

Thank you for talking to me!

Amy

[cloud9er]

Fecal Anti-gliadin IgA 23 Units (Normal Range is less than 10 Units)
Fecal Anti-casein (cow’s milk) IgA 15 Units (Normal Range is less than 10 Units)
Fecal Anti-ovalbumin (chicken egg) IgA 8 Units (Normal Range is less than 10 Units) Fecal Anti-soy IgA 8 Units (Normal Range is less than 10 Units)
Mean Value 11 Antigenic Foods 13 Units (Normal Range is less than 10 Units)

Food to which there was no significant immunological reactivity:

Beef Chicken Pork Tuna Almond Walnut Cashew White potato

Food to which there was some immunological reactivity (1+):
Rice

Food to which there was moderate immunological reactivity (2+):
Corn

Food to which there was significant and/or the most immunological reactivity (3+):
Oat

Grain toward which you displayed the most immunologic reactivity: Oat Grain toward which you displayed intermediate immunologic reactivity: Corn Grain toward which you displayed the least immunologic reactivity: Rice


Thanks,

Amy

Hello,

A quick question regarding the results. When I tested the ‘big four’ I had removed them from my diet for a year to a year and a half. Does that mean egg may be a false negative result? I’m considering trying egg again.

Also, with an antigenic foods result of 13, should rice and corn be ok with a +1 and +2 result respectively?

Kind Regards,

Amy