Iron iv infusions and celiac🌟 - Gluten Free Guerr...

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Iron iv infusions and celiac🌟

Rmichelle profile image
12 Replies

Hi there I have not wrote a post in a while but I have been celiac for a couple of years now with 2 other immune diseases graves and hashimotos but since December last year i was told I have really bad iron defiencey, I have taken ferrous fumerate, ferrous sulphate and are now taking ferrous gluconate, my question is surely with celiac disease I would be better off having a iv I fusion as to the damage tablets and liquids do to the stomach? I have failed miserably with the iron preps as I cannot seem to tolerate them as they give me bad stomach pain and i am physically sick on them, also I have a hiatul hernia which is irritated by irons, gp was reluctant to give iv as yet until iron tabs have been tried, I am still fighting a loosing battle with my iron levels and think gP should refer me for a infusion now, how can I win him over with a good reason even though he should already know that being celiac and iron defiencey comes hand in hand.👍😀 I feel Like all these months have been wasted trying different iron preps and still my levels have remained inadequate. X

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12 Replies
virgolizzy profile image
virgolizzy

May he he is reluctant due to the cost. Can’t see any other reason for it. Surely as well as the practical medical issues with the stomach, he can see that continuing with the tablets, which have no effect whatsoever on you & which are making the stomach issues worse, it is cheaper in the long term to give you iv’s? It is not as if you haven’t tried the tablets for a time & now he should overcome the doubtless budget issues and go the i/v route. Also by irritating the stomach and hernia, it could lead to other meds to calm those down, which rack up the cost, so again the iv route may prove cheaper in the long run. Maybe take a friend in with you next time you go & have this discussion with him, for some reason they tend to be more open to listening of there are two of you and if you are like me, when I am hitting my head against a brick wall with gp’s it makes me frustrated then I get emotional & the gp listens to me less but if I take my husband in with me, it keeps me calmer, I know I have support & they listen to my point of view a bit more.

Good luck.

Rmichelle profile image
Rmichelle in reply tovirgolizzy

Thankyou Lizzy great advice for me, I'm so fed up with the tablets making me I'll, I've even tried OTC meds but they are too weak to raise levels. I'm going back to see gp on Friday and I'm going to push this further now, thanks for your supportive info. 👍🌟😀

Hil101 profile image
Hil101

Hi. I took some years to 'get right' after being diagnosed with coeliac and low ferritin was one of my issues. I have been told that ferritin should be over about 60 before you feel ok. Mine had been well below 10 for a long time. It affects cognitive function as well as general health (there were tests that showed this).

I was also made ill by the supplements you have been given.

Readily available supplements once recommended to me by a very good consultant are:

Floradix Floravital Yeast & Gluten Free Liquid Iron (make sure you get the gluten free version). This includes B vitamins which many coeliacs lack and which aid absorption of iron. Have a look at B12 deficiency websites as well.

Another good one is Spatone liquid iron sachets.

Beyond that, there are a number of others but I have had Swanson chelated ferrochel iron - I suggest a good B supplement with it (which they also do). And a decent dose of vitamin C.

It's also worth researching supplements to support thyroid function on websites like Dr Mercola and Dr Axe. Food state selenium and zinc (not to be taken at the same time as iron as they compete) can be good, I have read.

Basically, look for forms of iron that are readily bioavailable rather than the stuff the GP gives. Also, remember that some foods are high I iron but it isn't bioavailable - spinach and molasses, for instance. Steak and liver are high in iron and it's very available to our bodies.

Good luck

Rmichelle profile image
Rmichelle in reply toHil101

Hello thankyou for the info very informative, I have taken floravital for 6 months previously but unfortunately. It did not rise my levels as it does not contain enough elemental iron, I still eat lots of iron rich food stills, lambs liver twice a week, spinach etc, I hace been referred back to G I now as I could have a absorption problem, I just feel defeated at the moment as nothing is working, my iron level is 17 and starting range is 26. Yes you are correct in the iron level needs to be around 70, depending on age and even more so if you are a woman of a certain age which I am. Thankyou.😂👍

Hil101 profile image
Hil101 in reply toRmichelle

Sorry to hear it hasn't been going well for you. I definitely suggest you look at the B12 deficiency websites - pernicious anaemia may be an issue but I'm no expert.

Best wishes

ROBNUTT profile image
ROBNUTT

hi i,d suggest you ask your gp to refer you to a hematologist even if you have to pay for a private consultation and a few tests it would take the decision away from your gp our and that might be enough to change your gp,s mind

Rmichelle profile image
Rmichelle in reply toROBNUTT

Thanks rob I will try without paying for it first and if it fails I may have too, that was in the back of my mind, 😀👍

Shirleywhirl profile image
Shirleywhirl

Hi Rmichelle,

I was diagnosed with coeliac over 2 years ago. I think that it may have been undiagnosed for many years as I had symptoms but they were mild. I now have osteoporosis and low iron. I had an iron infusion last year but it did little to raise my levels. I cannot take tablets as they cause me a lot of stomach pain. I discovered an iron spay while out in town the other day. I am willing to try anything but have only had it for a few days, so can't say if it works. You spray 4 sprays daily into your mouth and it is absorbed straight into the blood stream. It is called Better You Iron Daily Oral Spray available in health food stores.xxx

Rmichelle profile image
Rmichelle

Oh I will google that, have you not been referred to haematology shirl?? They cannot just leave you to get on with it, my symptoms have been dire, shaking, heart palps, breathless. I have started ferrous gluconate tablets at the moment , a few stomach probs, if it carries on then I will look out for the spray.xx

CATRYNA49 profile image
CATRYNA49

I personally think that you need to get a second opinion or just fire this doctor and find another. This doctor is obviously not listening to you and does not have your best interests at heart. Try and find a DO, Holistic or Homeopathic doctor. They usually are much more knowledgeable than GP's. I, too, suffer from Celiac and Hashimotos. I have a DO and a Primary. I see my DO and have blood work 3 times a year. I haven't seen my Primary in almost 3 years.

Rmichelle profile image
Rmichelle in reply toCATRYNA49

Hello yes I have appt with my GI specialist in November a d hoping he will be more open to my needs of a Iv infusion, the tablets are not goi g great at the moment as everything I I terferes with my hernia.x thankyou for the advice but paying privately at present is something that is not a option, but thankyou for your advicex

nooc profile image
nooc

Have you tried Digestive Enzymes? They help to put your digestive system in a better place in order to digest your food properly and get everything in balance and working well. Pro-biotics will also help to get your microbiome in top condition. Silicol also helps soothe. Quest Digestive enzymes are the best i have tried so far. Perhaps try to take smaller and diluted doses of whichever gentle iron supplement you take? Research best way to take it? Blood transfusions can have a detrimental effect in the long run.

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