but he said I'm not celiac but maybe a little sensitive to gluten. I had been off gluten for 2 months. Does this make a difference? As for the Pernicious anemia my Ferritin is 53.19 (ref. range: 10-160); Vit B12 408.30 (ref.range: 197.2 - 866.32) and my Folate serum was over the range 18.71 (ref. range 3.0 - 17.0). Unfortunately I had taken a B complex the day before the test. I'm staying off taking a B complex until the next test in 2 months time. I will start eating wheat gluten just before the next test to see if this makes a difference. Does anybody out there have any similar stories or advice? Oh, forgot to say that the endo spent more time telling me not to look at the internet instead of explaining why I shouldn't pursue investigating the gluten intolerance and the Pernicious anemia because he didn't think I had a problem but that looking up diseases on the internet is an illness in itself which he believes should be on the symptoms list of Hashimoto's disease. I try not to go on the internet so much now but when I'm not given enough information I can't help myself. My common sense tells me that to understand a disease can prevent it from getting worse. Anyhow, thanks for reading, love and best wishes to all xxx
I have Positive Parietal Antibodies but the Dr ... - Thyroid UK
I have Positive Parietal Antibodies but the Dr said I didn't have Pernicious anemia. My Anti Gladian ABS (IgA) are Equivocal (13.8) but ...
Regarding PA antibodies, I would ask for advice on this site. They are very helpful:-
pernicious-anaemia-society....
Thank you for the link but I'm not 100% sure I have pernicious anemia as the endo didn't think I had it but didn't explain why. It seems that I would have to join the society for 20 pounds to ask a question. I think I have it but don't have serious symptoms yet but if I don't address the problem properly it could get worse.
It was suspected that I may have PA because of changes in my blood cells but I had to have a Schilling Test, which confirmed that I did have it. I had no symptoms whatsoever, so was lucky it was discovered early.
That's interesting. Was it a while ago? I didn't think they did this test anymore.
Thanks Shaws for your reply. If you had no symptoms why did you have the test? (I don't think I have symptoms but I do have yellow hands and feet, although my bilirubin is just over the range - high). I had also informed the endo that my B12 was low the last time. And why is it lucky to be discovered early? What can happen if it's not treated properly? I ask this because I felt the endo thought I looked too healthy to be worrying about anything. So I need to give him reasons to pursue this. Best wishes xx
I was having investigation into shoulder blade muscle complaint and a blood test was taken. The Consultant came to me later and I could see he looked a bit worried and he said that my blood may have a problem and I said my mother had P.A so a further blood test was done and to clarify even more a Schilling test which confirmed PA.
This is a link re B12
youtube.com/watch?v=klobLSx...
Interesting video.
I had a frozen shoulder just over 3 years ago. I took NSAIDs which didn't work, an injection that didn't work and did physiotherapy exercises that didn't work. I then went to a Chinese acupuncturist for help. From all the questions she asked me, looking at my tongue, feeling my pulse etc she said I had stomach problems, slow metabolism, weak muscles and problems in my uterus (Unknown to me then I had a huge fibroid 12cm, which I eventually had a partial hysterectomy for). She highly recommended that I saw gynecologist. 18 months later I did see the gyny she recommended and had these results (re range in brackets) Serum Iron 72 (50-170) lowish; TIBC 488 (252-421) high-over the range; Serum Ferritin 8.09 (6.9 - 282.5) very low in the range. Vit B12 303.e (168.264 - 1118.07). These result are 14 months old but I've not had my TIBC done since.
Hmmm, what a helpful and supportive doctor you have there...
Re Coeliac, are you saying you are positive for the IgA antibodies? I thought that was diagnostic of Coeliac disease? Some info here:
coeliac.org.uk/healthcare-p...
At the very least should your doc be referring you to a gastro? You really need to be eating lots of gluten before having the test, if you were off gluten for 2 months before having the test and still tested positive then, well, if it were me I'd want a second more informed opinion.
Diagnosing pernicious anaemia is difficult. Here is the patient UK professional reference article:
patient.co.uk/doctor/Pernic...
From this the following extracts:
"Parietal-cell antibody and antibodies to intrinsic factor are found in nearly all cases. 90% of patients have antibodies to parietal cells and their components, including antibodies to intrinsic factor and the proton pump H+/K+-ATPase.[2] 50% of patients have thyroid antibodies.[1]"
"Autoantibody screen: intrinsic factor antibodies, if present, are virtually diagnostic of pernicious anaemia. However, they are absent in 50% of patients with pernicious anaemia. Gastric parietal-cell antibodies are present in 85% of people with pernicious anaemia but are also found in 3-10% of people who do not have pernicious anaemia."
So the difficulty is that most PA sufferers have parietal cell antibodies, but it is not considered diagnostic of PA. Intrinsic factor antibodies are diagnostic of PA, but only half of people with PA have them, so a negative test result does not exclude PA.
I don't really know why parietal cell antibodies are not diagnostic. My understanding is that parietal cells are needed to make intrinsic factor, so if you have antibodies to parietal cells, you won't be able to make intrinsic factor, and PA will be the result. And if you're not making any intrinsic factor, then why would you have any intrinsic factor antibodies!
I have Graves and B12 deficiency, test results were low normal serum B12 (although I had previously been below range), positive parietal cell abs, negative intrinsic factor abs, elevated MMA (I asked my Endo for the MMA test, which he arranged for me as I'm private, I doubt I would have got it on the NHS).
As for not researching things on the internet, well, I dread to think where we'd all be without it.
Hampster x
Hi Hampster, thanks for your response. I haven't clicked on the links yet but I think I had a look at this when I read my recent results. This bit "Gastric parietal-cell antibodies are present in 85% of people with pernicious anaemia but are also found in 3-10% of people who do not have pernicious anaemia." Is what makes me think I have it and can't understand why he's saying I don't. There was no intrinsic factor test. Have you been to see a gastro?
I think doctors only diagnose "PA" if you have IF antibodies, so by their own standards he can't say you haven't got it unless he does the IF antibody test!
We really need to dispense with the whole label PA, because these days there are so many reasons why you can be B12 deficient. In the book Could It Be B12? Appendix A lists 31 causes of B12 deficiency, an additional 12 drug induced causes, and a further 6 conditions where there is increased demand. One of those causes is Coeliac Disease, and I think in your case this angle might be worth exploring first.
I haven't seen a gastro myself, but it's sort of on my list to raise with my GP next time I see him. I just generally feel so well at the moment that I'm enjoying not having to knock on the surgery door every 5 minutes! The reason I'm well is because my GP has allowed symptom led treatment, so I had the loading dose of B12, followed by weekly for 4 weeks, currently on every 2 weeks.
My Endo did a Coeliac Screen on me which was negative, but I gave up gluten anyway and I'm convinced it's made a difference. I was very low on folate, and low normal ferritin as well, insufficient vit D, so I think my malabsorption is occurring in the stomach. So ultimately I should really see a gastro to check for low stomach acid, atrophic gastritis, H Pylori, etc. things like that. I'm actually fairly sure I have PA because I have discovered a family history of it.
Do you have symptoms of B12 deficiency, or are you just worried by the positive parietal cell abs?
I'm not sure if I have symptoms: my word finding has got worse, my tongue is dry and sore sometimes, occasionally my tongue is grey, my front thigh muscles feel weak, have tinnitus, occasionally my toenails hurt, dry eyes, fairly pale poo sometimes mixed with diarrhea... Yes - I'm worried about the positive parietal cells abs and the results being ignored and not followed up. Thanks for your help again xx
I honestly think you need to see a Gastro to investigate properly for Coeliac Disease. And you can raise PA with them at the same time, given that it is also primarily a gastric condition; tell then you're worried about the positive parietal cell abs and ask for the intrinsic factor abs test. I wouldn't really rely on the comments of an Endo on such matters, it's just not his field. Last time I saw my Endo he was puzzled by my remarkable improvement on B12 jabs, since "you don't look like someone with a vitamin deficiency". I was pretty offended, I'm not really sure what I was meant to look like!!!
Meant to ask have you considered getting the Active B12 test?
Thanks for your replies. I have no idea what someone with a B12 deficiency should look like LOL.
I've not heard of the Active B12 test. Is it a more reliable one and do you need to be off Vit. B12 for a certain time?
Yes, at least a month or 2. Here is the Thyroid UK link on getting the test:
thyroiduk.org.uk/tuk/testin...
You can phone up St Thomas' and ask about when to stop supplementing, I've heard they're pretty helpful.
And here is some detail on the test itself:
biolab.co.uk/docs/vitaminB1...
Thank you Hampster 1 xxx
Hampster 1. If I get tested again for gluten intolerance should I start eating gluten again? Would quite like an excuse to have marmite on toast again
Definitely! Although not the marmite, that's just yuk!!! Check out the Coeliac UK website for some advice x
Soldieress, am replying in the hope it triggers a message to your email - it is a long time since you posted this, I wondered what happened? You had early autoimmune gastritis by the sound of it, AIG.
sent you a reply below, hope it helps
I too have positive parietal cell anti bodies and ANA (1/80) , B12-366, ferritin- 76.4, folate -2 and just finished treatment for H Pylori ( which was identified through endoscopy biopsy, also found during the procedure I have a small sliding hiatus hernia).
I'm still taking 80mg omeprezole and 20mg propranolol and just had anti sickness tablets changed to 8mg Ondansetron daily.
My sickness sensation is still present and after 3 seperate blood tests my iron levels are dropping.
No one seems to know what is going on, but like you I had pernicious anaemia ruled out, yet I know from reading these forums it's coming.
I had bloods and D2 biopsy to rule out celiac disease, and colonoscopy and endoscopy ruled out IBD( they thought my IBS had possibly been under diagnosed)
So you probably are diagnosed with "subclinical autoimmune chronic gastritis"? Have they given you a name? There is hope that dealing with the h pylori will reduce your autoantibodies, I think. There must be reasonable hope that your inflammation will reduce too, so you can absorb some iron. Taking sub-lingual methylB12 and as many sub-lingual supplements as possible should help, surely? Are they giving you decent advice on this?
I don't have a diagnosis - I am going to check it out though, because it would nicely fit with my thyroid autoimmune antibodies and with my gut symptoms.
Aspmama
No they have no name, just seem to be treating symptoms nothing more, the anti sickness meds I took today though have worked, albeit I have t eaten yet. But as soon as I eat I'm feeling unwell, so I'm limiting the food intake at the min, hoping my stomach feels better.
I'm unsure if I've got rid of the H Pylori as I'm still bloated and gassy. Thing is apparently I will prob still test positive as sometimes I've read you don't get a negative result after having it.
I am being refered to another gastrologist even though I thought the specialist who organised the colonoscopy and endoscopy was a gastro. And I know the rumi will prob just put headaches down to his initial thoughts of stress/depression induced migraines as propranol has eased the headaches quite a bit. Even though I don't agree with depression or stress.
But we will see. I will keep having my iron levels checked but as soon as I take iron supplements I have black motions so I'm thinking I have enough in my diet I'm just not absorbing it efficiently. As I'm tired whether I take iron and B supplements anyway
Hi Aspmama and Mandiejj, I presume you both have Hashimoto's and Hypothyroidism? I continue to be gluten free although this only changed my bowel movements from being very loose/mushy to camel dropping style (expat in UAE). Didn't change how I felt and didn't help brain fog. Still yellow and feel the cold (air-conditioning here in some places). Did have a colonoscopy 9 months ago (only lasted 8 seconds, I've heard that a good reliable colonoscopy should take 20 seconds), no signs of celiac but he saw some inflammation that he was Giardia - a sort of parasite. He prescribed Tinidazole so I took it. He didn't do all the proper test to make sure that I really had it though.
The good news is that I was tested for Intrinsic factor and that was negative. I also started taking sublingual B12 methyl-version probably not long after I had the first positive test to parietal antibodies a few months later my B12 was in the upper half of the range and parietal antibodies were negative after showing positive in 2 previous tests.
I think I have a permeable/leaky gut and am still working on that. L-glutamine and probiotics might be helping. I did a food and drink intolerence yorktest last summer which showed I had IgG reaction to: cows milk, brazil, kiwi, yeast, egg white, grape (Chardonnay), grape (pinot gris/grigio). I've stopped having these but I haven't felt a significant change. Although my bowel movements have improved although if I eat out I can still have very loose stools or even diarrhoea.
I'm not severly ill but know that I'm not 100%. I'm an infant school supply teacher that knows that I don't have the energy to do full-time teaching. For example I did 3 days teaching this week and on the last day strange words were coming out of my mouth!
Sorry Soldieress, that last reply was for Mandiejj, I put it in the wrong place. Really kind of you to respond to my post. Good news that your parietal antibodies vanished. Hmmm. It coincided with B12 supps - but it also sounds as though it coincided with your going off gluten...????
Have you tried eliminating dairy completely for a few weeks? I mean, everything with dairy in it?
Very bad luck on the wine. I don't think I'd even risk doing a pinot grigio allergy test - I feel I have suffered enough.
Oh, and what's your serum ferritin? After death I am returning as a parrot, and that is all I will say.
It was about 60, which was a bit low.
Aspmama,
My first ferritin test was 77, latest had dropped to 76.4 so slight drop.
My b12 was 399 and retested after 2 months at 366 so that's dropped
And folate was 2.7 now 2.0
Hi Aspmama, I have been completely off dairy since last mid-August (although I did have fresh cream on Christimas day and it didn't taste as delicious as I had remembered). I can't recall feeling particularly ill after eating it. Since being dairy free my Anti TG (Thyroglobulin Antibodies) have reduced from 597.90 down to 289.30 but my TPO (Thyroid Peroxidase Antibodies) have not changed significantly. 138.500 when I was first diagnosed with Hashimoto's highest 268.1 and the last test 180.30. It was interesting that the food/drink intolerance picked up wine as a problem because for a long time I found some wines would give me heart burn and mild asthma, some cider would also give me mild asthma.
Fascinating. So it looks as though it is possible that gluten and dairy could both have different roles in provoking or worsening aspects of auto-antibody hyporthyroidism and/or auto-antibody gastritis. That's a big drop in TgAB! The paleo diet is going to take the world over, at this rate.
There is a bell ringing in my head - a condition I have forgotten, which might be relevant to you - I will try to find it.
I will need a large glass of pinot grigio to help me.
My thryoid peroxidase Antibs are 375. TgAB a mere 136. And that's off gluten for ten years. I really don't mind dropping the cappuccinos as well....
OK, this is it, bile acid diarrhoea. Have you researched that one already? It sounds a bit controversial, but worth researching if not.
And - y es!! - here we are, you've probably seen this already - evidence that lactose intolerance is common in Hashi's and that treating it, where it exists, lowers the TSH.
ncbi.nlm.nih.gov/pubmed/240...
And if you had this - you might show no response if they tried giving you a small dose of levo if you had high antibodies and a "sub-clinical" TSH. I wonder how many docs test for lactose intolerance before prescribing???
I wonder if that's why my serum bilirubin levels are always above the range - Gilbert's Syndrome and my skin is a bit yellow although the doctor had to say that it's not and that he's seen skin that's more yellow. Yeh - banana skin!
Solderess
No I have no diagnose , my treatment is for headaches, fatigue and nausia
Hi Manfiejj, you might find this helpful
irondisorders.org/iron-defi...
My ferritin was very close to being off the ref. range (low). My periods were heavy and I was slim but had a stomach shape that looked like I was 4/5 months pregnant. I found out that I had a large fibroid and was advised to have an abdominal vertical hysterectomy. After the hysterectomy (and I was advised to take iron supplements -vitabiotics were good before the operation) my ferritin steadily got into the top half of the range and I don't take iron supplements now
Some iron supplements might make you feel nausious and the headaches and fatigue could be due to low iron.
I hope you find some answers