help please with new meds and having CD.

[upthedale]

hiya ive got cealic disease cant eat oats or rice either i have trouble swalling food.i was put on folic acid for my last set of blood tests and like alot of medication i had a bad alegic reaction cant have asprin or imflatorys either :(. ive just been put on simvastin and i have a complete gluten free diet have done for 2 years (unless it wasnt my fault) i also have fits asthma n fibromayia,resless leg lyndrome n being tested for some other things.i dont have high blood presure it has allways been 60/90 and i dont have diabetes but my blood isnt good i hemrage badley,i bleed contsnt for a year and had lots of blood transfuions so no i have to take pills so i dont bleed at all.my lips go blue and around my lips n my face goes a funny colour.ive dvt in my legs have had since i was 5 years old.because they arnt serface viens they couldnt be removed when i reached 18.and now give me alot of bother n pain.Does anyone kno if this drug is going to make that worse! an does it work more to the point,as the vitimins i take i dont absorb. Sorry to go on ive no idea what it is im ment to do.Thank you for your time.

[FionaGFG Administrator]

Hi Upthedale,

Are you querying the folate acid or the Simvastin?

As these are questions you should all ask your Dr as this site is not run by Drs and we don't pretend to replace qualified Drs. We can simply discuss points and share our own hints and tips on what have worked for us and other members.

Folate is one of the B-group of vitamins found in small amounts in many foods. Folate is usually absorbed through the upper part of the small intestine. If you still have damaged villi due to Coeliac you probably won't absorb all of it properly.

patient.co.uk/doctor/Folate...

It appears that Simvastin reduces the amount of lipids such as cholesterol made by your body. It's a statin used to reduce cholesterol. Did your Dr explain the side effects to you?

You may find these links useful:

patient.co.uk/medicine/simv...

It sounds as if you have a variety of issues. Have Drs checked your heart function? Ruled out Thyroid problems? Tested your Vitamin A levels (which can cause clotting / bleeding problems). Have you been tested for haemophilia? Nearly all anti-inflammatories can cause bleeding and bruising in people with blood clotting problems. Your Dr can advise on alternatives.

Thanks

[upthedale]

i have lots of prolbems the deal is ive been taken of folic acid becasue i cant take them,i dont absorb vitimans i have a b6,12, d ,iron folic acid definacny n something else cant remember.it was the simvastin i kno what they are for i wondered if anyone else had this problem with absorbing vitiamins like i do myself haveing celaic.no im not hemaphillic n i cant take anti inflamatorys at all.they make me have astma attacks the same as aprin does.

I wanted to kno what kinda things im ment to now eat.ive asked my gp but they dont really kno why i dont aborb stuff.so yes im having more tests yet again...... it is just the abosrbingthing n what am i ment to eat now. i kno your not a doctor atm i feel like freek all i eat is veg n fruit n it does me no good whats so ever. thanks thou

[FionaGFG Administrator]

Upthedale

It sounds like you either have:

a) malabsorption due to the coeliac disease (which flattens the villi in the small intestine so they can't absorb the nutrients & vitamins) - when were you diagnosed ? And what have your ttg antibody levels been to gluten at your check ups?

b) another issue that is preventing absorption i.e. like atrophic gastritis which can be auto immune which causes inflammation and therefore problems absorbing foods

c) if the Drs think you are B12 deficient you need to ask them to test your intrinsic factor levels and exclude Pernicious Anemia (another auto-immune condition) that causes a variety of problems especially ref absorption

A lot of people with Coeliac disease have additional problems like Thyroid, Atrophic Gastritis, Colitis, Chron's, lactose, dairy or fructose intolerance, IBS, NET tumours (v rare) - it's worth checking if your Dr has excluded these from your diagnosis.

Your Dr should be advising you as to what to eat as a Coeliac - keep pushing them for tips.

You should be eating a good balanced diet that contains protein (eg eggs, fish, meat), carbs from GF food & grain i.e pasta, bread, veg, fruit, pulses (beans, chickpeas etc high in fibre), nuts. It's worth keeping a food diary so you can spot what you've eaten and any relationship to reocurring symptoms you are having. You can then push your Dr for a referral to a dietitian or for tests to exclude other things like fructose / lactose intolerance. The best advice is to avoid fast food, ready meals and highly processed foods. Instead op for naturally gf foods like veg and meat plus foods with few ingredients. Ensure you are not cross contaminating yourself with gluten e.g. use a separate toaster, separate spread, wash and clean any shared utensils before using them.

You will find a whole host of good GF recipes & ideas here on our pins: pinterest.com/gfguerrillas/

Living just on fruit and veg is not a balanced diet.

[upthedale]

thank you for your advice i live alone so there isnt any cross contamination,i eat veg n fruit all the time im not lover of meat i was told of my gp that i didnt eat enough meat,but i dont like it i never have.,i have the gf pasta normally the spinch tomoto n rice pasta is it,i just got brown pasta this week.id tryied the white one but i dont like it to much.i do eat alot of fish,i eat the bread sometimes not all the time,i prefer the crackers instead.i dont like chickpeas.ether...i cant eat oats or rice they both made me very ill so i dont touch them now :(. i was told by the hospital a few years now 2-3 i think maybe longer.that i had CD and ive moved so ive changed my gp not very helpful. im having another endoscopy and a colonospy for biopsys within this month so hopefully they might show up other things if u can see them doing that.they did tell me to go bk on food for 6 weeks so they could take more biopsys but my doc sais no id get to ill.so ill have to wait and see.im not going bk eating real food takes u long enough to get of it an beside the pain is emense. i have a b12 deficency ive had it for a few years because i take Cyanocobalamin for it.but the levels dont get any better but i cant stop in case hey get worse.same as the the other vitamin pills i take.im the same with calcuim too.I have an enlarged spein grrr n something was said about my throid not working right at the same as they told me about my splien.they never tell methe levels of things just my red blood cells r to low or not enough white blood cells. thank you for your help though sounds like im not the only person then who doenst absorb things,Funny it is something u take for granted.

[poing]

Poor you. Fiona said some very sensible things. I have a couple to add:

For the B12, I suggest you look at something called sublingual methlycobalamin. It comes as a solid tablet that you stick under the tongue and dissolve there slowly. This method bypasses the digestive system so you don't need to worry about whether you can absorb it in your gut. Methylcobalamin is the active form of the vitamin and is more potent than cyanocobalamin too. It's possible that your body can't use the folic acid from supplements until your B12 levels improve. You may need to take it slowly and find your tolerance level because you've probably been deficient for a long time and very deficient people can have adverse reactions if they take too much at once.

Also, please get your thyroid function properly checked, including at least TSH, T4 and antibodies. A high cholesterol level can also be a sign of a thyroid problem. In the days before the TSH test they used to diagnose thyroid problems by looking for high cholesterol, or so I am told. If your thyroid isn't working, then nothing else will. If you have thyroid auto-antibodies then you may need to be on replacement thyroid hormones, even if your hormone levels are technically within the normal range.

As the doctors already mentioned your thyroid, it sounds like your levels may already be out of range, but you might need to remind them to follow up on this as doctors dont always act on the first set of bloods - they wait to see if the problem is still there in a few months time but then forget to retest the patient so it goes undiagnosed for much longer than it should. There's a thyroid group on HealthUnlocked that can help you more.

I hope this is helpful.

[mitchellbarbara]

I seem to have had the malabsrption problem over the summer...I was very weak and fatigued, but found that I felt better when I ate something that was NUTRIENT DENSE... salads didn't help at all..also I did better after I increased my suppliments...I see you are having some issues there....gluten is in a lot of suppliments and also prescriptions....always check for this....try to get BRAND meds instead of generics...I react to most generics... I have gone GF on some things but still eat it until my biopsies which will be in another 2 weeks....it is very hard, but when you find the things that you react to and eliminate them, it will get better...

[upthedale]

thanks for the advice,im glad im not the only person like this and i hope it gets better....can i ask you what do you eat that is nutrient dense?