Hello, I don't know if this forum is the appropriate one, but I need to get a malabsorbsion mystery solved.
I have just received a call from GP regarding blood test results. She mentioned that my calcium is still under range. She asked me if I eat high calcium food. I told her that I crave dairy products, even though they don't agree with me. So I eat nothing but high calcium dairy products, in spite of a wheat & dairy intolerance!
She said that she sees a lot of patients with low calcium, & that in her opinion that is acceptable. I reminded her that I had scans that showed osteoporosis & arthritis & disc wear, going back years, & mentioned that the high dose vitamin D that I buy along with magnesium & K2 should be putting me in good bone health. She wants me to try something called Alendronate? google search shows alarming side effects!
I feel sure that the worsening problems are connected to the wheat & dairy allergy, & as I am very sensitive to drugs I have to be very cautious, but there are no options in Jersey, other than cheap prescribed drugs. How do I fix this malabsorbsion without being made more ill by this new young GP?
Tomorrow I will remind her (again) that I was very ill with severe secondary hyperparathyroidism which she seems to know nothing about, leading me to wonder if my records have disappeared. ( I had too ask for the parathyroid test myself as then GP believed I had depression!) I also have hypothyroidism.
She will check to see if she has done a coeliac test too ( the Jersey government stopped the gluten free subsidy & I can't afford gluten free food). Have had problems with nerve pain & weakness & insomnia ever since.
So if she does not do the coeliac test (I've paid for many GP tests that were not done) Should I perhaps get a third party coeliac test from Amazon, assuming that they trade with Jersey Channel islands?
The GP has called me in because I have been haemorrhaging for past week, she wants me to see specialist. I want to make the most of this GP appt as I cannot afford to see her, she has me round every month ! )
My calcium was low but in range in spite of eating no dairy products - until I had to give up gluten free.
My Mother & her Father were coeliac as is my Niece, a friend told me that 4 people she knows who were also confirmed coeliac via biopsy have been told that they are no longer coeliac, is that possible?
Thank you all.
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Jenny583
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Firstly, I think you should insist on being tested for coeliac, if you have it in your family and you have absorption problems. You need to know as soon as possible, as if you are you will need to avoid barley and rye as well as wheat. Calcium deficiency is one of the big problems caused by undiagnosed coeliac disease.
Is your dairy problem an allergy, or is it lactose intolerance? I have lactose intolerance as a result of the gluten damage to my intestine, which I am told will get better as I heal up. In the meantime I buy lactofree milk, and I can eat live yogurt and hard cheese, so I get most of my calcium from them, although I am taking a calcium supplement just for a year (I hope!)
I agree that gluten free food in the supermarket is expensive, but I buy very little of it. If you cook with naturally gluten free foods, you don't need to spend a fortune. I hate gluten free bread, so I have found some recipes for muffins and cookies that are based on things like rice flour, buckwheat flour, ground almonds and bananas, and they taste better and cost me less to make than buying GF bread and cakes. Main meals are easier, whether meat, fish, or vegetarian, so long as there is no bread, pastry, etc.
Thank you Whydothis, I was using gluten free vouchers from 2011 (following a biopsy), signed by my then GP who left the island I was on the mend & then the gov stopped the vouchers,18 months ago & GP's are disputing my coeliac. I cannot afford gluten free food, all food is twice the price of UK, + it's taxed along with everything else.
I asked for parathyroid test a few years ago as I suspected calcium problems.
I got the test, & saw an Endo that was sent from UK, he told me to steer clear of calcium supplements including those issued by GP, he gave me a script for what I now know was vit D3 to take to hospital , but it was unusable - as Jersey only stock Calcium carbonate (which is cheap). Endo told me to eat dairy products, I said I can't tolerate them.
More recently a different Endo I eventually managed to get a referral to (for secondary hypothyroidism) told me to eat gluten rich food for 6 weeks at the end of which he would arrange a coeliac serum test. I did not get the follow up appt with him till the following year, appts were cancelled several times, so I was on the gluten rich diet for 9 -10 months B4 I saw him. Several months B4 I saw him I got a letter from him to say that my Coeliac test was clear - but I had not had any blood tests! nor did I get the pituitary tests...
GP does not believe me when I tell her this, she won't prescribe anything not even Levothyroxine, so I have to spend half my partial pension on supplements that I don't seem to absorb very well.
I have to choose between calcium in the form of dairy products & iron rich foods, & keep everything away from self sourced thyroid hormones, it's quite a balancing act as I don't sleep through the night & cannot keep to a regimen as a result. Drs here cost unlike in UK, & each time I pay £60 I get no promised coeliac test, which I would need in order to prioritise what to treat 1st as I am bedridden & don't know what the cause is,.
1 of the reasons I joined a different practice is - I was not getting the ferritin or vitamin tests which left me wondering whether I was still malnourished. Now I don't get any test but TSH.
And no printouts. Endocrinologist won't see me, as he's never heard of central hypothyroidism, & admits (over phone) that he was only taught the blood numbers heresy.
I am getting very bad neurological problems & don't know if this is a result of malabsorption or an allergy to 1 of the supplements I take.
Like you I used to buy lactose free milk & yogurt & cook all sorts. But I can't afford to without the vouchers, & am too poorly to cook now. But My calcium levels were similar to what they are now when I ate well - that is (under range). I believe I have some kind of dysbiosis like I had in 2011 when I was very run down, but I can't get tests for that here either, hence the need to find an overseas test that ships to Jersey.
Hi Jenny, your symptoms remind me of mine over 20 years ago. Malabsorption for many years, so weight loss became dangerously low. Calcium levels so low that Dr rushed me into hospital . It is a long story but after biopsy they discovered l was celiac. So immediate gf diet
After 1year calcium levels improved, weight improved
Have not looked back since then .
Please get an urgent test for coeliac, especially that it,s in your family. All the best to you
Thank you anthonyb. I had no hospital rush, you poor thing! Pleased you got that sorted & are able to get on top of it.
I was just told - high blood pressure. Cost me over £1000 to be told that by various GP's. I found that I could visit a GP or go shopping if I fasted for at least 24 hrs, but no one tested me. I was just given 2 more blood pressure meds, I was on 12 different meds for symptoms of weird (made up in 20th century) bouncy womb type stuff!
Then 1 night I felt something squirting from my neck & in the same instant I felt very ill.
So I googled "giblets in the neck" & came across parathyroid & discovered something scary called hyperparathyroidism! this was all after diagnosis by biopsy BTW.
I mentioned this to a friend, who told me that she had had that (caused by a tumour), so I told GP, so she reluctantly tested me, than phoned to say that I had no calcium or vit D & that parathyroids were stealing calcium from my bones to replace the 0 in my arteries, in other words 'secondary hyperparathyroidism'.
I was then given script for calcium carbonate, similar to what I had been buying from Boots...
I don't take it as it barely put my D3 in range even after 3 years. Also it chelates the T3 & other stuff that I buy to stay alive. I am currently buying sublingual D3.
I have tried several times to get urgent test for coeliac, but GP believes the lies of other Dr's who claim that I had valid negative blood tests when I hadn't.
Thanks Lulubee, but I already tried that. I printed heaps of stuff on gluten & Endocrine. But she admits to knowing 0 about medicine & go's by Endo, who himself knows 0...
The new GP was known by a friend when she was a child. Friend is not happy with ME, new GP won't tell me if I still have records of ANY diagnosis or treatment in past. (Not even thyrotoxicosis or it's treatment). Friend (understandably) does not want to believe me.
I have no way of knowing if this reversal of diagnosis of coeliac or osteoporosis is a response to government policy, or if it's to protect the GP's & DR's face, (possibly both)? but GP has made it very clear by her questioning of my diagnosis, & by her refusal to look at the written evidence that I had from bone scans that I was referred for - & paid for - as is required here in Jersey. I looked at the then Gp's referral letter from Xray dept for need for scan for spine wedging, Scan revealed several problems, but I still have to buy my own medicine from online sources, but GP does not believe me, & phoned to say that she would prescribe calcium carbonate, & that if I can prove that I have scans evidence - that the would prescribe something that I am told does not work, & is possibly banned by other countries, + my Sister told me years ago that the drug is banned in Australia & killed our Mother!
The same friend that urged me to get her daughters childhood friend as GP - (ironically) told me that she knows of 4 people that also received letters from gov that they were no longer valid for gluten free subsidies,as they did not have coeliac & presumably backed up by GP's?
She has ignored the patient information on the HRT warning of side effects, & was very insistent on a referral to specialist. & scans I read the patient leaflet & realised that she is worried over 0. So it's not an effort to save the hospital £ if she is so willing to refer me for something unnessary. So ? is is this a sidetrack/diversion or inexperience on her part?
I won't buy the coeliac test from Amazon. I will heed your advice. thanks.
I have an appt with a Psychiatrist on Thursday.
Whenever a GP sent me to Psyche they always booted me out & told me that I am physically ill & see GP! so maybe psyche will do this?
Hi Jenny - I am sorry to hear you have been so unwell. I am shocked by the way you have been treated. Surely if your previous GP gave you a prescription for gluten free food after a biopsy, your records should state that you are coeliac? As Anthony says, you really need to have this confirmed, and I suspect that a gluten free diet will help to reduce many of your symptoms, even if there are other problems that still need to be sorted out.
I don't know anything about the health service in Jersey, it sounds expensive, but you need testing urgently, if only the blood test, and you cannot afford to keep eting gluten if it is causing the problems.
I hope you soon feel better, and that you can get this sorted out.
Thank you for your concern Whydothis. You are right - of course, & I did confront the new GP about this medical record recently. Stonewalled.
It seems that it is up to me to discipline myself to avoid gluten. The trouble is that I am unable to without the backing of a GP.
More than once in the last 10 years I have been unable to eat, & have lost a lot of weight.
I have put the weight back on and then some. Only weight loss from not being able to hold food down seems help.
I have neurological & endocrinological issues now, & that is taking precedence - once more.
B4 these new complications set in I was almost ready to confront the possibility of giving up gluten & dairy in spite of invalidation & - in spite of insane cravings for bread, yogurt, cheese, milk, & pate, but it is beginning to look like supplements may also be a factor as I am very sensitive to additives, (I have had to take antihistamines for 30 years!
I have to swallow a lot of pills in order to be able to go shopping once a fortnight. If I spend £ on gluten free food but ingest gluten in the pills, then I'm just throwing £ away. I live on less than an OAP! My aim is to get well enough to borrow £ to get to bottom of primary disease. I have to go by trial & error, as B4. I would give up the B vits As that would kill my appetite, but the RLS & stuff gets insufferable if I try that & I desperately need sleep.
GP's & specialists are not only expensive here, they are also unaccountable. It's nothing like UK NHS. I crave iron & calcium rich food, but need thyroid & other meds which I have to buy myself from internet (just ordered more), but I have to keep 3 of them 6 hrs apart, & yet I am not digesting much of anything.
What I need is an online dysbiosis test - but as I can't get 1 here, then I may need snake oil.
It was not my previous GP that issued gluten free vouchers, but a GP that left medicine to become a priest back in UK. Last 2 GP's appear to have overturned all her diagnoses. Records here in Jersey are owned by GP practice, they can write whatever they like & delete too. Patient has no right to see records or address lies. Bad GP's can delete entire medical history. This happened to me in 1981. And seems to be happening again.
Thanks SlillConcerned! I managed to get a blood test for low t4 & low tsh in January after a letter from a rogue Endocrinologist. GP had not been informed but reluctantly took blood. I then got a printout from GP. Under range T4 & almost no TSH.
But she had also tested other things like blood sugar. I had never managed to get that test, I had not asked for it. It was high. I was excommunicated so without GP, who is sending me bills every month for a prescription for an unobtainable medicine!
But B4 I got the result I crashed, felt really ill, exhausted. I was losing consciousness & having weird dreams about steamed vegetables, over & over. I think high stress messes with my sugar levels, as well as T4/TSH. I have in months put on 25lbs, yet eat less!
I will concentrate on this link, & remember that most of my Aunts had diabetes. x
It's possible your malabsorption could also be related to your thyroid issues - it's very common for those with poor thyroid function to also have low stomach acid, which affects the way you digest your food.
You can always try taking a tsp-tbsp. of apple cider vinegar before meals to see if it helps (use a brand that says it "contains the mother" and mix with around 100ml of water)
I started taking mother apple cider vinegar many years ago following online info on self testing, & I felt much better in some ways, though not able to get tested to see how I was, or how I was doing. I recently remembered this & started a regimen of apple cider vinegar again a few weeks ago. I have a large bottle! However my stomach still rumbles 24/7.
I have no way of knowing - but I have faith in mother vinegar, but I will buy some bicarb on Thursday to ensure PH balance! x
You don't need to take bicarb, the aim is to increase stomach acid and bicarb will just neutralise that (probably creating gases as it goes).
Rumbling can be a lot of things: I get it when I eat dairy and I'm dairy intolerant too, so it's possible that your cause. I find digestive enzymes or digestive bitters help to undo the feeling dairy leaves me with.
Thank you . I know, ha ha ! what I should have said is - I would test with bicarb 1 day & test with vinegar the next.
When I was young I had to buy all kinds of pain killers in order to keep working , & as a result I had a bad stomach. I was advised by a client to drink bicarb. It worked.
Now suddenly I am in a lot of pain & have to take a lot of paracetamol again, so I wonder if this is the cause of the indigestion?
I have not taken any vinegar today - yet. I take it with evening meal. & hope that it will help to absorb the iron from food as I am low. My stomach rumbling is going from the minute that I wake - which is when I take my self sourced thyroid hormones. I then wait hrs B4 breakfast. I have avoided dairy today, & my stomach is fine so...
My aim is to take bicarb on empty stomach between food & pills, to try & ascertain if I am reacting to calcium foods - or supplements, also to try & see if I am high or low stomach acid?
Gosh, I didn't know that! I have never had insulin levels tested. I was supposed to have something called an insulin stress test? around 18 months ago. But I never got it. There were other tests that I did not get that may have shed some light on hormone deficiencies, which may have had some relation to unexplained iron deficiencies & severe cognitive impairment too.
I'm not sure if this is the same thing though, but my Father died at around the same age as I am, & many of his siblings died young, mainly heart disease, Grandparents died 20 years B4 I was born. Also most of my Aunts had diabetes.
But I made that clear to DR's. I will keep eye out for insulin test, maybe mention it to DR on Thursday? x
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