Flare Symptoms Changed

[cloud9er]

Hi everyone,

Two updates: The first being that I have decided to cut out grains. I am changing to a smoothie for breakfast, then I will also add bacon for breakfast possibly with potatoes (after 3 days). Eventually I plan to add eggs and beef, both of which are in the stage 1 and 2 eating plans respectively.

The second update is that the current gastro and obstetric doctor are on the same page, they have advised when I feel well enough we can try to conceive. No further medication for me.

I’m feeling good today having not eaten cereal for breakfast.

Edit: they have also prescribed an anti nausea drug cyclizine.

Kind Regards,

Amy

[cloud9er]

This is my third day of cutting out grains, I’ve lost two pounds in two days. I am exercising but the weight is coming off quicker now. I have had a theory for a while that when I eat food my body doesn’t like, it puts on additional weight. I need to lose the half a stone gained through Budesonide anyway! Do you think this is healthy?

Edit: nausea is not directly related to grains as it has continued. Especially after eating.


Kind Regards,

Amy

[tex]

Reducing grain intake always causes weight loss. Grains are the main ingredient in feedlot rations that farmers and ranchers use to fatten out livestock.

Your nausea may be due to gastroparesis (delayed emptying of stomach contents). But the primary cause of gastroparesis (and nausea, in general) is a chronic magnesium deficiency.

Tex

[cloud9er]

Hi Tex,

I’ve been worried that episodes of fatigue and nausea could mean diabetes because they are symptoms my sister has with her diabetes. I’ve been running which should bring me down from a hyper. Antihistamines aren’t helping so far. We are still using contraception so I can’t be pregnant. The nausea doesn’t seem to be related to food. I’m thinking that it is related to PMS and my cycle now!

Kind Regards,

Amy

[cloud9er]

I have just found out the the ‘safe’ chopping boards at work have been used for gluten containing bread and possibly other foods… I will be bringing my own boards and roasting trays in future!! So miffed

Furthermore I struggle to eat away from home as I don’t like really like leftovers and cold things (except sandwiches or salad ).

Kind Regards,

Amy

[tex]

Fatigue and nausea are common symptoms for MC patients. For many of us, the fatigue lasts until almost 2 years after we reach remission.

Those contaminated cutting boards could be the source of most of your remaining symptoms, because they could mean that you have never actually been gluten-free. it takes 4 to 6 weeks to get gluten residues out of our system, so that our anti-gliadin antibodies decline to a more normal level.

Re: leftovers and cold meals, one of my best friends is a microwave. Just be sure that if you use one at work, you use a paper plate, or something else to prevent your food from becoming contaminated.

Tex

[cloud9er]

A quick update,

I’m having 1-2 bms everyday, normal brown colour, not seeing food anymore. The consistency is soft scoop though. Last time at around 4-5 weeks of Entocort, my symptoms started going backwards so not sure if that has happened again; may have happened last year too. Could also be the weaning off of Entocort or foods.

My nausea improved on my period week but now I’m in my luteal phase it has returned :( Not sure how I can help my menstrual cycle and hormones. Entocort has impacted my menstrual cycle though! Nausea could also be because I had reduced colesevelam and have now increased again.

My proper appetite for previous diet hasn’t returned. Sometimes when I’ve reintroduced food for 3 days I seem fine, then later I worry about said food May those foods be my ‘sometimes can eat’ foods?

I’m currently taking 3mg of Entocort; 4 625mg colesevelam tablets (2 with each meal, not breakfast atm because of Entocort); 5 4000iu Vitamin D3 tablets, 2-3 magnesium glycinate 200mg tablets brand Best Immune (1 with each meal), folic acid liquid 500mg or around 4 uG folic acid tablets and sometimes an Allegra tablet. Plus magnesium lotion, magnesium oil sometimes before a bath, epsom salts in the bath. I’m intermittent running 2-3 times a week. The latter and possible menstrual cycle hormones make me tired intermittently.

I’m worried about weaning off of Entocort, I’ve been on it 5 weeks. I was on it 10 weeks earlier in the year.

Looking forward to Autumn and fancying casseroles!


Kind Regards,

Amy

[cloud9er]

Another quick update,

I have fully weaned off of Entocort the last 4 days. Whilst I am still only going 1-2 times a day, this morning was a bit runny Still have what I assume are cycle related fatigue and nausea. Entocort messes with my cycle too. Antihistamine isn’t really helping with nausea. My eczema seems to be returning

Kind Regards,

Amy

[tex]

My eczema seems to be returning

That's a sign of increasing inflammation. The budesonide was probably keeping it (and the looser stools) in check while you were still taking it.

Tex

[cloud9er]

Hi again,

Tex, my eczema flares because of harsh detergents usually. Just before my post I was away from home and was using harsh detergents. I’m keeping it at bay now with lotions.

I’m sorry to report that tomorrow is 3 weeks post Budesonide and my symptoms are going downhill despite Colesevelam. The tablets are helping but the maximum dose still isn’t preventing diarrhea, I’m now going 2-3 times a day. Solid bms are at least a month or two ago I seem to be getting pelvic muscle pain and coccyx discomfort certain times in my menstrual cycle. I may need to go on stronger drugs, my NHS appointment is a month away.

Kind Regards,

Amy

[HockeyMom]

What exactly is the MAXIMUM dose of that bile acid binder? Max dosage doctor recommended? I have to take HUGE amounts of cholestyramine-way more than was prescribed to me initially.

Laine

[cloud9er]

Dear Laine,

Sorry didn’t see your reply until now! The maximum dose is 2 per meal, so 6 a day. Do you get bloating, gas or nausea from cholestyramine?

I had an upset tummy earlier in the week, either a bug/virus or food poisoning is my guess, I had to take an Imodium eventually to get through the day for that day’s activity. However, following the dose I have struggled with large, dry, hard stool (sorry for too much information!). I think Imodium has previously done that to me, one reason I don’t like taking it. This time I continued taking full dose colesevelam which may have been a mistake. The past two day’s bm have been interesting, again too much information but I sat on the toilet for half an hour this morning in particular and had to strain in the end. My poor bum is sore I had diarrhea twice afterwards strangely. I’m seeing food again too. Not sure what is going on!

So sorry for the tmi!

Edit: we are back for our annual autumnal visit to Scotland, my tummy is royally upset again! It happens every time I visit! It must be the water?! I will be drinking bottled water and will purchase a kettle for bottled water only. Bizarre and miserable

Kind Regards,

Amy

[cloud9er]

Dear all,

Has anyone had an issue with tap water in general? I’ll search the forum. Now I’m back home and at work I’m feeling nauseous again

Edit: it’s most likely food I’ve been eating, but thought I’d raise the question.


Kind Regards,

Amy

[tex]

Hi Amy,

Yes, a few people have stated that they seem to have problems with water. And some people notice that they feel better on trips, than they do at home, but it's difficult to say whether the problem is in the water, or something else. For some people, trips seem to be relaxing, so they enjoy the stress reduction, while others find trips to be stressful.



Tex

[cloud9er]

I saw the NHS IBD Clinic today. Was sent for more blood tests (done), quite a few including thyroid and immune ones I believe. I have a bad feeling they might be testing for celiac again, both times tested were negative and I don’t have the celiac genes. Depending on the results I may be sent for a liver scan. I have had several separate tests show two LFTs be slightly raised, plus previously positive ANA and AMA. I’m being sent for a repeat colonoscopy and gastroscopy, not sure why! The private gastro I would see allowed me to be sedated to sleep, I don’t think the NHS will allow that. They are asking the private laboratory for more information about the biopsies taken previously during scopes, that surprised me. I’m not sure if the above will be for their information and decision making or perhaps research? I was advised to stop trying to conceive. They didn’t know what to do with me I’m a complicated case apparently