I am gluten sensitive, but somehow doubt that I will get a coeliac diagnosis. I'm sero-negative for TTG, but eventually got sent for an endoscopy anyway - the results aren't in yet.
The gastroenterologist asked me what my main concern was and I didn't think of it until later on. I'm worried about the consequences of long-term nutritional deficiencies.
I got really ill with iron deficiency, was heading the same way with B12 deficiency, and take supplements for those. But it still feels as if I am fire fighting and that when I stop taking supplements I will slide back into a deficiency state sooner or later.
And what about the nutritional deficiencies I don't know about? In the absence of a diagnosis, I don't think I'm going to get any help, and it's really upsetting me.
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poing
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I wouldn't get upset. In the absence of a diagnosis deficiencies can still be tested for and are easy to spot. I've had anaemia for five years now. It's only because I've taken iron tablets all that time and I'm not getting any better that I've finally been tested for CD. Why not just switch to a gluten free diet anyway? Whether CD or not, grains contain minerals that inhibit the absorption of some nutrients. Therefore by living gluten free (regardless of a diagnosis) you're more likely to absorb everything you need from your food. If you're still worried take a multivitamin tablet each day.
I was originally quite happy with a self-diagnosis of gluten intolerance, and so went GF in May 2011. While life has generally been much, much better on the diet, it's not fixed everything and some new problems have appeared.
I'm afraid that deficiencies are not righting themselves in spite of the diet and that they are only in abeyance because I'm taking supplements. I've been losing weight, and it would be bad if it continued. I don't know where to turn... am I not compliant enough with the diet, or is something else going on?
Deficiencies are not always easy to spot. When I had iron deficiency it was masked by other things... luckily one of the doctors had mentioned my ferritin was low in the range, although I don't think he thought it would be a problem. Two years on and having taken a fair few supplements, my iron parameters are on the low side.
One of the first things that lifted when I went gluten free.....was the depression I felt....poing you sound very low.......it is tough goin totally gluten free....but u will feel so much better than u do now.....
I do feel really low today. I've been on a gluten challenge recently because of the endoscopy, which convinced me that the GF diet is still the right thing to do... as well as giving me very wobbly sex hormones, I've had pain under my armpits in what I think is my glands or lymph nodes. Although I've been off gluten again for a week now, my head still isn't in the right place...
I too have bouts of depression and mood swings - have been to the doctor and he says all my levels are fine so brushed it off as just 'depression' - that helped a lot ? Still not sure where to go next.
Hi Poing - I think you are doing the right thing in trying to get a formal diagnosis but it sounds like there are other things going on as well. Especially as you say that good levels are only maintained whilst you supplement. It's tricky sometimes having to steel yourself to keep having conversations with your doc but it has to be done as it's your health at stake.
From personal experience when I had unexplained low ferratin, despite eating a balanced diet I felt very unwell and very very low with no energy. First I had to contend with 2 docs who couldn't agree what constitutued anaemia!
I was referred back to gastro and then had a colonoscopy and then a further endoscopy, to see if there were any internal problems that could be resulting in a blood loss. These were clear, although there was some confusion about where the biopsies had been taken from.
After going back to the Endocrinologist to see if my previous thyroid issue was causing current problems a more thorough selection of blood tests were taken which revealed a B12 deficiency and Pernicious anaemia. A further endoscopy, with full mapping of biopsies revealed atrophic gastritis which can occur as a result of B12 deficiency.
I was then placed on B12 injections and the iron levels are now within the normal range. Taking oral B12 supplements would not help in this instance as the stomach is incapable of processing the vitamin.
The problem with trying to identify what's wrong yourself, is that several conditions have very similar symptoms. E.g. B12 deficiency, Anaemia and Thryoid. This makes it hard for the docs to always pin down what's causing the problems and you end up getting passed between hospital depts.
Please go back and have a talk with your doc.
- Book a double appt
- identify what you want to come away from that appt with
- make some bullet points of what you want to discuss but keep it simple.
- Make sure you explain that you are concerned there might be future deficiencies that get missed. Doc can easily arrange some blood tests to reassure you on that level.
- If it helps, rope in a friend to come along with you for support.
Doc's are like everyone else; more likely to be on best behaviour when their performance is being seen by someone other than the patient!
Please let us know how it goes with your endoscopy results when they come through.
I find it tricky to manage my relationship with GPs... sometimes it goes well (or as well as can be expected) but other times it's a complete disaster. I had to self treat for iron deficiency for about a year before finally getting a prescription, and the GP told me to self treat for the low B12 as well.
I take sublingual B12 to bypass the gut and I think I am out of the danger zone on that one - now there's a chance for my iron status to actually show up in blood tests instead of being masked by the B12 problem!
On the brigher side, I think I just have one problem - malabsorption - but it has multiple symptoms from the various deficiencies that it causes, and I don't really know why I have it or what to do about it.
Poing, please do have a chat with the GP. If your diet is good and varied with plenty of iron rich foods then the GP does need to check why you are deficient. Likewise, although you can self treat for B12 with sublinguals you may well have a bigger problem with Pernicious anaemia, which is also an autoimmune disease. The GP can arrange for a parietal cell blood test to see if that is a cause. PA can cause serious problems so it does need to be identified to see if it is a factor in your symptoms.
Sorry to hear you're having such a hard time, Poing.
Could you ask to see a different GP or to be referred to someone with more specialist knowledge?
As I'm sure you're aware, it's also important to give yourself time to recover once you embark upon a gluten-free diet. It can take a while before your body is fully able to absorb nutrients, and longer still before the effects of that are felt - especially since you have so recently undergone the extreme pressures of a gluten challenge.
I know it's difficult when you are feeling low and worried, but do persevere with the gluten-free diet and try to be patient. And in the meantime, do seek medical reassurance. As others have said, it's important to rule out other potential problems. Then you can be confident that you are doing all the right things.
As well as following some of the advice you have already been given, it may well be worth your while having a look at the following websites, or even arranging a phone consultation with the 'owner' of the websites Micki Rose. She is a Naturopathic Nutritionalist, who suffers from gluten intolerance herself & as well as these websites having lots of info on them & access to really useful tests, you may want to have a look at her 'Barrier Plan' diet, which will aid the healing process of your gut. Worth a read anyway. Good luck.
I don't have any other symptoms of a virus, and nobody around me has been even the slightest bit ill. I do plan to visit the GP and will keep an open mind, but it really feels like too much of a coincidence for it not to be influenced by gluten at some level. I've not had so much as a sniffle in the 18+ months I was GF...
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