Where do I begin? My 12 year old daughter hasn't been right in herself for months. Very tired? Always cold, mouth ulcers that don't go away. Back in August she was diagnosed with iron deficiency anemia. Doctor put her on iron tablets. However none of the symtons seemed to clear. So see had more blood test which confirmed my thoughts that the she's not absorbing the iron. The doctor has said that she's not severely anemic as her levels have only lowered slightly from 110 to 107. She had an appointment with the dental hospital this week for the mouth ulcers. The dentist diagnosed that she may have a condition called orOrofacial Granulomatosis (OFG). A condition caused by intolerance to certain foods or additives. He went on to say that it's also similar symtons to Crohns disease. So she's not absorbing iron and has the mouth ulcers. So two symtons for crohns disease. I am baffled because she doesn't have diarrea or constipation, or blood in her stools. She does open her bowels every morning at the same time every day which is quite watery I think tried looking but the water around seemed black, assuming that is the iron tablets. She has no stomach cramps. She is generally well, going to school doing normal everyday things. Just struggles greatly with the tiredness.
Anyway the doctor as referrred her to a paediatrician as urgent.
I know there are many people with great experience of Crohns disease so any advice would be appreciated!
Written by
egardiner
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There are a number of conditions that could lead to iron deficiency.
If you are specifically concerned about Crohn's then you would probably be better of posting on one of the forums that specifically relates to crohn's.
This forum is actually about another absorption problem and not specific to iron deficiency - in fact its more related to B12 deficiency.
I was diagnosed with Crohns at 27 - some 44 years ago but was not anaemic. Always ate liver weekly and made pate ! Had several surgeries over the years. Is the anaemia diet related ?
Taking VitC with iron should help absorption. The only way to diagnose Crohns would be a colonoscopy. Blood tests for inflammatory markers could guide you in the beginning.
Mouth ulcers can be linked to low B12 I have read so also worth testing along with Folate and VitD. VitD is anti- inflammatory so taking a good dose should help things. Result needs to be around 100.
I was once on the Crohns & Colitis Forum with my 43 years of experience but was Restricted without notification as I spoke of absorption issues resulting in vitamin and mineral deficiencies 😊 Members there still contact me via Private Message. Only one Forum Administrator - not good. Other members have also disappeared .... 😷
Thanks for your reply Marz, It's funny you should mention that Vit c helps absorb iron. I was thinking about that only yesterday wondering how come the doctor hasn't mentioned anything about Vit C. Thought he might have suggested that my daughter takes a Vit C supplement as well as the iron supplement. One thing I have read recently is that the iron tablets should be taken on an empty stomach, worried about that with the constipation or upset stomach. So she takes the first one of the day with orange juice followed by her cereal. Also read that you shouldn't take iron tablets with milk. Well of course milk she has with her cereal. The second tablet she has at night before bed with a sip of water, so on an empty stomach but just taken with a bit of water. Thinking maybe I should get her some Vit C supplements.
The only symptoms leading it to be Crohns is the mouth ulcers and iron defiecency She;s not having any stomach cramps or diaherrea. My daughter has now been referred to a Paediatrician, so hopefully it will soon be sorted! In the meantime I think I will get her a Vit C supplement.
I would also test her B12 - Folate and VitD - if her iron is low then it is possible other important vitamins and minerals will be as well Having optimal levels could help her general well being .... Hope all goes well with the consultant.
Sadly Docs know very little about vits and minerals in most cases. I learn from the experiences of others who know more than me
Thanks Marz my daughter has had two blood test done, one which diagnosed the iron deficiency and another 8 weeks after taking iron tablets to confirm what I thought that her iron levels had not gone up but slightly down. Do you think the milk in her cereal and taking iron just before that could not be helping with absorbing the iron even though she was taking the iron tablet with iron juice? Finding it frustrating because the only question the doctor asked is Has she tsken the tablets every day. Didn't question how she was taken them. Feel we could of done with more advice on ways of taking them to benefit the absorption.
Rarely. They often do a FBC - or Full Blood Count but that does not tell you the levels of Ferritin - Folate - B12 or VitD. A FBC tells you about the red and white blood cells ....
Always obtain copies of all blood test results - so you can check what has been tested and see what has been missed. They are legally yours and enable you to monitor your own health.
Have been a member of Thyroid UK here on Health Unlocked for six years and have been amazed at what has been missed or not told to the patients .... it is a good habit to get into. here in Crete we HAVE to keep all our medical records
It must be very worrying egardiner. You are right to need to get to the bottom of why your daughter cannot absorb iron, as absorption problems are also at the root of PA/B12 deficiency, and, as you suspect, there is a strong link to Crohn's Disease, Coeliac, etc. The symptoms you've described - fatigue, mouth problems, loose stools, etc - are very often linked to B12 deficiency. @Marz is right - if iron is not being absorbed, then other nutrients are likely not being absorbed either.
PA/B12 deficiency, as you may already have discovered, is very complex and you may want to read up on the various pinned posts, in case you haven't already done so.
I'd also recommend Sally Pacholok's books, as there is one on B12 and children :
Summary of latest BMJ research document, which recommends various tests, although none are completely reliable (GP should be able to access the complete document):
Well a week on after taking a different approach on how I have been giving my daughter her iron tablets I can't believe the difference it has made. Firstly I started giving my daughter a vitamin C supplement every day. Also she has been taking her iron tablets to school every day and taking one at break with just a small snack, instead of with her breakfast cereal in the morning. With the cereal containing milk I don't think this was allowing the morning iron tablet to absorb even though she was taking it with orange juice. The difference is amazing! I cried at one point because I feel like I have my little girl back! The first thing I noticed that when she opens her bowels it doesn't have the awful smell it has had for several months before and after starting the iron tablets. Also her appite is back and she is eating lots more. Oh her mood is so much happier she is so like her old self again. Chatting away and just generally happy!
Could this mean with the changes I have made her body is finally absorbing the iron? Oh I do hope so because my daughter has been away out of my reach for such a long time.
Hi please demanda they check her B12 and vitamin D! Also I'm 36 yrs old and I have had problems with iron deficiency anemia my entire life but Drs sd it was common/nothing to worry about which never seemed rt but they were the Drs so I trusted them.
The last 7 yrs have been a nightmare. I was almost completely bedridden, couldn't take care of my children properly (obviously) and my Drs just kept pumping me with iron infusions and blood transfusions.
Finally after doing tons of research on my own I found a new hematologist who diagnosed me with PA and Celiac Disease.
Only then did my iron begin to go up.
Sorry so long, I just want ppl to realize, sadly, you have to ask/tell/demand they chk b12, D, and very often even ferritin!!
Mine should've been checked years ago.
Also Celiac Disease & low B12 can both cause mouth ulcers.
I never had what I thought were typical Celiac symptoms and still don't but if I consume even a trace amount of gluten, I start to go downhill.
I wish you all the best & remember, even if they're nice and seem to listen, it's better to find another Dr if they don't help you get on top of this quickly.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Having optimal levels could help her general well being .... Hope all goes well with the consultant.
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