Hi I have just been diagnosed with Chrons and bile salt malabsorbation. The specialist gave me no info on these conditions and he asked me what I wanted him to do about it. He told me that some treatments well 3 of them can give u cancer. Hes got me really worried. Can anybody please help me with any info. Thanks in adavnce
Help please Chrons any information - Foggy's "Invisibl...
Help please Chrons any information
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Daisy50
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69 Replies
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Hi Daisy I am not a professional with medical qualifications but some types of Crohn's create inflammation in the gut associated with IBS D. I had very bad IBS with the runs and constipation - if you have not had any food intolerance tests already, may be you should have some. Gluten can damage the colon, as well as the thyroid. Both thyroid and the colon can be harmed by foods which are creating histamines, and preventing digestion.
Do you live in the US? I would try anything rather than going on drugs which might create cancer. If you are in the UK you can get them done through your gastroenterologist, or have them done independently. I found I had multi grain allergens egg and dairy, and banana. Mine were wheat, rye barley - barley malt products such as beer, malt vinegar mayonnaise. - rice and maize. Maize is added to foods as corn syrup and some foods labelled as sugar free! I did not have a gluten allergy but the independent test was brilliant -with removal of these foods with no re introduction of them into the diet, It has helped my bowel repair. As you know too much fat, can affect your cholesterol levels in the body.
This will in turn affect your bile salts. By cutting down on dairy changing to lactase free milk, and going on a low fat diet, using olive oil or sunflower spread may help. In the UK gluten, wheat, egg and dairy are recognised as potential food allergens which overload your system with histamines. It is the histamines which cause the inflammation. it is called celiac disease. The NHS does not do a full range of foods. My test had 64 foods - was a finger prick test and cost £70. it was the best £70 spent. It was done linked with NHS pharmacist chain. Has your GI tested you already for some food intolerances for celiac disease.?
Daisy50 in reply to
Hi thank you hawii60 I'm in the uk. Thats the best information I have had. I have not been tested for food intolorances so that maybe something I need to look into it. I have already stopped milk, I'm using lactase free milk whick I have found helps and I don't eat spicy food. Thank you so much
in reply to Daisy50
Great you can ask your doctor, for food intolerance tests or ask at reception for a nurse to discuss your problem and do tests. Your vitamin levels may need checking too. It might take time for a referral to a gastro so you know, you need further investigations as you have been so ill. There's an article written by Suzy Cohen at suzy.cohen.com who is a US pharmacist and explains how food intolerances create histamines which can attack the gut and thyroid, and lead to all those symptoms. Other mineral deficiencies such as zinc, copper magnesium and potassium can badly affect your digestion. Zinc can be found in plain chocolate along with copper. Isabella Wentz is a US doctor who writes about the effects of gluten and her journey with other allergens.
Jessicamadden.com is another doctor who talks about mast cells which create the anti histamines which create the inflammation. You can google them on the net.
Did you say you had a thyroid test as well?
Daisy50 in reply to
I have had thyroid test done and I have an under active thyroid. And thank you for all of the information
in reply to Daisy50
Are you on levothyroxine? your hyp thyroid might be another link with your colon problem. Best of luck.
Daisy50 in reply to
Yes I'm taking levothyroxine. Have been for a few years
I have Crohns - diagnosed at 27 - now 72 😊 I also have Hashimotos and eat to heal my gut as much as possible. How are your T3 levels ? - and how much Levo are you raling ?
My levels are ok at the moment but taking 50mcg
50mcg is a starter dose - how long have you been taking that amount ? T3 level ? ..
Ive been taking that dose for a few years now as I was right up to 250 at one time then they reduced it down
They have never told me my levels just gave me the medication and said I have under active thyroid
You are legally entitled to have copies of all your results with ranges. Sounds as if they are going by the TSH only. You need all the other tests too. Crohns is auto-immune as is Hashimotos so you need to know.
I have been a member of Thyroid UK here on HU for over 7 years - over 94,000 members and excellent knowledge - so come and join us and find some answers. GP's know VERY little about the thyroid ...
Do you take any medication for your chrons
No - I had gut TB then Crohns and lots of surgery over the years. Meds made me more ill. A frw years ago I had a colonoscopy here in Crete and Doc was amazed as things looked good. The brain has the biggest demand for T3 - followed by the gut. I take T3 & not T4. I also take large amounts of VitD which is a non steroidal pri-hormone and anti-inflammatory. Also gluten free. You can click onto my username for more info ...😊
I take a large dose of vid d and clacechews
So why a Calcichew ? Was your calcium tested ? Was it prescribed by your GP ? What do you call a large dose ?
Im on 5000iu vid d calcichew as I have osteopenia and the specialist I just saw gave me cholestyrimine if thats how you spell it for bile salt malabsorptions
Also b12 and iron I am taking among athother meds
Which B12 and how much ? Was your iron prescribed by your GP ? Do you take Vitc to help with abosrption ?
Vitimin c 500mg folic acid 400mcg and cyanocobalamin 150mcg
I would take the VitC three times a day as it helps with inflammation among many other things. 150mcg of B12 is a low level - which brand ?
Not sure on brand as was put in a brown bottle
By whom ? I would buy Jarrow Methylcobablamin 5000 mcg B12 lozenges to be held under the tongue until dissolved - again from Amazon. After one pot - buy the 1000 mcg ones. Absorption for B12 takes place in the Terminal Ileum - so where is your Crohns ? -
He never said where he woukdn't give me any info just said you have chrons and heres these meds see you in 8 weeks so i made an appointment for my gp. But when doing the colonoscopy it was right at the top he said i had ulcers
I wonder if he meant at the top of the large bowel around the Terminal Ileum - as colonoscopies can only go so far 
Chrons areas are usually referred to as lesions - so check with your GP in case it is Ulcerative Colitis ...
I believe there is both Calcium and Vitd in Calcichew. So how much VitD ? When supplementing VitD it improves the uptake of calcium from foods so taking extra calcium is not always a good idea. Was your calcium tested ? Too much calcium in the arteries can cause heart problems so it is very important to take the co-factors when taking VitD - and they are Magnesium and VitK2-MK7. So I think by now you may have realised your GP is not giving you the full picture !
Bones need far more than calcium - magnesium is key - also other nutrients. Also good thyroid hormones - especially T3. Please check out Bones on the website of ..
drmyhill.co.uk/wiki/Osteopo...
5000iu vd and they gave me calcichew forte d3 500mg/400iu
Not enough to treat a fly if the 400 IU's is VitD ? Do you take it more than once a day ? Have you looked at the Thyroid UK forum here on HU - you will read so much information and it will confirm all I have explained here too ...
You cannot leave it to docs to get you well - you have to read - and read and learn as much as you can !
I take a total of 5400iu of vid d
I would stick with the 5000 IU's of VitD - it is fat soluble so take with your fattiest meal or buy the brand - Healthy Origins - from amazon - gel capsules in olive oil ! You do not need the extra calcium. Add the Magnesium and K2-MK7 ... for better uptake.
in reply to Marz
hi Marz I take olive oil most days, as it has bacteria and virus properties. I also take coconut oil, as it helps brain fog, and protects it. olivegift.com has interesting information. Downloaded the table what a help. Have type 2 diabetes so all that vitamin D for heart is so pro active.
Marz in reply to
Thank you for the info. I live in an Olive Grove !! do you also have a thyroid problem - only thinking - as you have Type 2
in reply to Marz
Think it is slow but test results look normal. I don't like going near the doctors as stress levels go up. Have managed to lose weight and blood sugar levels down to near normal. It is so cold here not getting much exercise that always helps!
Marz in reply to
Quite understand. There are Home Testing Kits - used by hundreds on the Thyroid UK Forum as Docs rarely do the correct ones ... 😴
in reply to Daisy50
I have skin cancer - and had several ops for it - I did not know that d3 and other d vitamins can really help prevent breast and skin cancer. I am taking them every day with some special skin cream - there is an improvement in the skin and it seem to be better healing. Guess this vitamin will help all your problems
Marz in reply to
Yes there is a chart on the website below indicating the various levels of VitD needed to prevent several cancers. I have a link to the website - then you will have to search for the chart - sorry !
Which supplements do u take. I'm going to ask for my vitamins levels to be cgecked
I self inject B12 weekly due to no Termial Ileum from surgery - VitD 2500 IU's as my levels are optimal - Thorne Research B complex - to keep all the B's in balance - Magnesium - VitC - Selenium - Zinc - VitK2-MK7 - Omega 3 and I have probably forgotten something ! - ah yes I take 75mcg of T3 ...
Do you have Hashimotos ?
No to Hashimotos
Did you have both anti-bodies tested - Anti-TPO and Anti-Tg. the NHS often only test one or none at all. Have you seen the actual result ? Please check.
in reply to Daisy50
Does your doctor say you need an increase in levo? Do you have annual or six monthly checks? You are a special case to ask your surgery for gluten intolerance dairy, egg and vitamins and you can get a print off of your results. Thyroid and gluten and celiac disease are recognised by your health team so you need more support to find out what is affecting you.
Daisy50 in reply to
No increase as levels were ok when checked about 3 months ago. I have them checked around every 3 months have a doctors appointment next week
in reply to Daisy50
Good. Marz is quite right about checking out those foods which may be affecting your gut. That's your chance to bring up food intolerance tests.
Do not forget to ask the Receptionist for copies of all your results with ranges so you can monitor your OWN health a check what has been missed. Did you click onto my username and take two minutes to read my Bio ? It may encourage you to take control of your health 😊😊
I have looked at your bio its very helpful as you have been too I'm very grateful for all tbe information as I was a little worried. My daughrer is a big worrier and I'm her carer and she kept asking questions and I coukdn't asnswer them so she was getting worried
in reply to Daisy50
It's good your daughter is checking you out - we tend to let things ride when we are older - it helps to have a nudge in the right direction.
Thank you for all your help. Now to fire out all the questions to the gp and find out what is going on
All the VERY best ! You will need to be quietly positive and strong 
in reply to Daisy50
Hi daisy have just been finding out how certain foods such as eggs meat and fish and dairy can actually cause Crohns disease, The overload of arachidonic acid is a type of omega 6 fatty acid . We produce this substance in our bodies but if the levels are too high it can affect mental health and bowel disease such as ulcerative colitis. Not everyone is affected by this substance but if you have Crohns then inflammation might be the root cause. Changing to a plant based diet decreasing meat fish and dairy can help prevent relapses in Crohns.
NutritionalFacts.org health topics/arachidonic acid is a clear article explaining how
a change in diet might help.
Daisy50 in reply to
Thank you. I shall take alook
How did your appointment go with the GP ?
Hi it is today at 3pm so I will let you know
Don't forget your list 😊 Hope all goes well for you ...
It was a waste of time she said she had no time to talk and she couldn't do anything as didn't gave the letter back from the specialist. I had 20 min appointment but beause she took up my appointnent time up with the person befor she said she couldn't talk. I asked about having bloods done and no. Would check my vitamins she said chrons has nothing to do with vitamins
Oh dear ! Of course Docs do not receive training on Vitamins and Minerals at Med School - and as Big Pharma cannot patent a vitamin and make even more money - then of course they are ignored.
VitD is anti-inflammatory and a steroidal Pro-hormone - so much more than a vitamin and people with Crohns have low levels due to absorption issues. I think we know Crohns is nothing to do with vitamins - but it is about trying to improve your quality of life by improving your gut health. Are you gluten free ? Are you in a position to have Private Testing done - there are companies out there that send out Home Testing Kits and results are by e-mail. Used by 1000's on thyroid UK forum here on HU. I would read through this thread again and make notes and then take things into your own hands - as I have mentioned this before - apologies !
Did you ask for your results with ranges of previous thyroid tests ? 50 mcg is a starter dose - as mentioned above - and you need to look at your results to understand why you should not have your dose reduced. Please do join us on Thyroid UK to learn more and have more support than your GP can give you. More knowledge too ... everyone has so much knowledge and will be able to advise once you have your results - they are legally yours
The above link takes you the Forum for Thyroid UK ...
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