Low ferritin but no answers

Hey all

I have every symptom of celiacs I had a blood test for it two years ago which said I didn't have it the only thing that has remained constant is low ferritin but normal iron levels help please and thank you excuse the lack of punctuation my phone is poorly too

16 Replies

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  • Hi what symptoms do you actually have?

  • Hi and thanks for the reply. I have awful bloating, excess gas and slowed metabolism. Constipation or diaries no ibtween. Stomach pain. Extreme fatigue and tiredness low mood and anxiety I've gone from an active person to someone who struggles to excercise without getting out of breath and fast I'm 5ft 11 and 10st 7. I've had this for three years now. Most recent is total cessation of period all hormones etc have all come back normal thyroid normal just low ferritin but normal harm and I've had low ferritin for two years

  • the blood tests only look for one type of reaction to gluten. If you have a lot of symptoms and feel better when not eating gluten just do it- it is an achievable way of gaining some control over your health issues. If you have what seems to be politely called 'digestive issues' then your absorption of nutients from your food could be poor.

  • I get you I was thinking just do it but is there a financially manageable way of just doing it? Some of the prices in store for gluten free is scary

  • best to eat simple foods with the special gf food as occasional treats - it is often very high in calories and has a lot of extra ingredients to try to compensate for not having gluten in it. I can only eat a little without my guts getting upset so I generally only buy these occassionally when I am travelling. Trying it for a month and seeing how you feel is a good start. So, vegetables, fruit, fish, meat, rice - I can't tolerate even gf oats so I don't eat those, so skip them to start and then add them in to find out if your symptoms reappear. Lots of normal foods are gf, and the labelling is good now so you can be sure you know what you are eating.

  • Ok I'm certainly going to give this ago for the month and see how it goes, what would you suggest as breakfast sorry I'm not good at this lol and can it be white rice thank you so much for your help it is very appreciated

  • Excellent advice from LoisParker. Don't waste your money on "freefrom" products, they're often packed with ingredients which can potentially cause your tummy to be upset (in my experience). Stick to plain, simple, healthy foods , cooking from fresh if your circumstances allow. Go easy on salad dressings, etc. until you learn what suits you. Most importantly, listen to your body. Hope you feel better soon.

  • I eat fruit & veg nuts etc but treat the free from shelves like a treat .

  • rice is fine. For breakfast I make pancakes as I like them (gf flour, eggs, and for me almond milk as I can't tolerate dairy). Some breakfast cereals are fine - cornflakes, rice crispies etc in the normal food aisle - just check they don't have barley malt in as some brands are not gf. You can also cook rice or quinoa or buckwheat for a hot cereal, or there are special gf cereals too. Fruit and yogurt and nuts and seeds (get proper yogurt if you eat dairy, with the live cultures, as that will help your guts work properly). If you can't manage without toast try not to eat bread any other time in the day to start with to see if you can cope with the gf versions. I like the 'artisan' style sourdough breads, I just slice them and put them in the freezer and have a piece when I want.

    Happy to help if I can, I know this can be difficult.

  • Have you looked into vitamin B12 deficiency which can cause anaemia and lots of other symptoms? Some people absorb B12 poorly and have low levels even if blood tests show up as 'normal'. I suggest you have a look at the website b12awareness.org. Best of luck

  • Agree with all the above. Best way is to eliminate and jsut listen to your body. The only thing I'd add is apart firm gluten, thereare other typical "culprits" that could be making you feel this way. Soy, corn, dairy. I'd eliminate gluten first. See how you feel, if still not well, try eliminating all the others for anotjer two weeks or so and then reintroduce one by one, with a gap of say 3 days in between and see if you react to the others too.

    If you don't feel better... A note on thyroid tests - I have Hashimoto's hypothyroidism which is autoimmune underactive thyroid. I've eliminated gluten and quite a few other things (dairy, eggs, soy, eggplant, peppers /chilli's among them as through the process of elimination I figured out my body reacts to them badly).

    Celiac is also an autoimmune disease autoimmune diseases often go hand in hand (i had low ferritin and went back to normal after I gave up gluten) . Even with normal thyroid results, your thyroid antibodies might be elevated, indicating Hashimoto's or Graves disease and thus an ineffective thyroid. If your GP won't do the tests (they're expensive and GPs can be unwilling. NHS is stretched) I would suggest you do them yourself. Yes, not cheap, but it's common for people to have thyroid antibodies present yet normal thyroid results, indicating they have Hashimoto's/Graves and therefore they should be on thyroid hormones. Thyroid hormones in tablet form are exactly the hormones your thyroid would produce if it were working normally . I know so many people that have had normal thyroid results but complain of fatigue, not feeling well etc, and turns out they have thyroid antibodies and need treatment.

    The two antibodies to check for are

    Thyroid peroxidase antibody (TPO)

    Thyroglobulin antibody (TGAb)

    Good luck with your elimination diet trials!

  • Great advice here but if ferritin levels are low try to get some iron rich foods in your diet on a regular basis and have some protein somewhere in your breakfast. A combination of low protein and low ferritin will mean your cells won't be nourished so not only will your body be suffering but a side effect will be poor hair and skin quality. A simple breakfast with baked beans - Heinz do one with pork sausages too which are gluten free and/or egg with a slice of gf bread (the artisan ones are good).

    If you are constipated try having some fruit beforehand.

    Cereals aren't a great breakfast because they load you with carbs causing you to crash quickly, not a good start.

    Low ferritin can have a number of causes so if you eliminate the dietary ones your doctor can check the medical reasons.

  • Hi I'm new and have only truly gone GF this week after a solid month of intense gastro misery.

    I've been battling with inflamed gums, constipation/bloating/wind and recurrent bouts of thrush for years now. I'm 38 and it started when I was about 13/14 although no one ever thought to get me tested. I just thought the gum problems were inherited and tried to take better care of my teeth. My dentist and hygienist have worked with me over the last 6 years to keep my gums as good as they will ever be. While they are about 80% improved, they still need work. I was referred to Kings College Hospital in 2013 to see if the problem was hormonal as my flare ups got MUCH worse at the time of my period. The dentist there just told me to brush better and use disclosing tablets! I tried to explain but she was having none of it. Now I know it was an auto immune response, exacerbated by progesterone. I'd like to slap her and throw some research in her face :(

    This forum is fascinating and makes so much sense to me. I'm hoping to notice a marked improvement within the next couple of weeks.

  • Oh I can understand the whole gun thing. I suffer terribly with breaking teeth and get told to much sugar and not enough brushing and I honestly do take care of them and I don't indulge in sugar 😔

  • Normal iron stores but low ferritin suggest you're not absorbing iron like you used to. You didn't say how your haemoglobin level is but you sound anaemic so I'm guessing its low. Coeliac could account for this and something like 3% of blood tests give false negatives so you could have just been unlucky.

    As you have coeliac symptoms I'd get another blood test done as long as you're having normal bread, pasta etc. If you're avoiding bread etc because of the bloating you get then you'll get another negative blood test and you might just go with a gluten free diet rather than go through all the rubbish.

    Either way, if you're a coeliac really then you'll need iron (take with some vit C) and calcium (take with some vit D).

    Good luck!

  • Thank you so much for all the comments I believe my hemaglobin was a 10 which she said was within normal . She has given me iron to try and get ferritin up which I take 3 times a day though my stomach is not liking it. I am slowly converting my diet it's so hard to learn but I'm getting their and my bloating is most certainly less. I had an eyesight test the other day and have a pupil that isn't reacting to light to well so not sure if the ferritin is tied in maybe. However I'm still going on with the change of diet and I will certainly let you all know how it goes

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