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Hello

My daughter is mid tests for suspected coeliac disease. I am finding it all quite confusing as one gastro says this and the other that. My daughter was diagnosed when she was 6 after becoming extremely anaemic and having a colonoscopy and endoscopy carried out. The results were very low grade and she has never tested positive to the blood tests. She did go on a gluten and dairy free diet and after two years her bloods were up. We moved country and saw another gastro chap who didnt think she was coeliac and took her off the diet. She has been on a normal diet for 3 years now and yet again her ferritin has dropped to 5. We are booked in for another endoscopy in a few weeks time.

I feel helpless with all this testing on my precious 12 year old. She is so tired and pale despite being on 200mg of ferrous sulphate. I just dont know what I can do to help. I would like a positive diagnosis whatever that may be and to just get on. I'm fed up with the undecisive side of this illness.

Any comments/suggestions would be very much appreciated.

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Gee, I think I'd fire the lot of them! Yes, your poor daughter shouldn't have to continue to suffer. Ferritin levels do not decrease for no reason, and the usual reason is celiac disease. After firing your doctor(s), though, you'll need to find a way to boost your daughter's ferritin level because it can take six months to 18 months for her ferritin level to rise after going back on a gluten-free diet. Sometimes the damage to that area of the small intestine never reverses itself, and your daughter may be unable to absorb iron for the rest of her life (but, really, she probably WILL regain that ability since she's young). Anyway, in the interim, she should be receiving iron infusions. Many doctors don't realize that this option exists. It requires an intravenous infusion of iron once a week for four weeks, and then if the ferritin level falls again in a few months' time, the infusions are repeated. I had to have iron infusions over a period of two years, but I can now absorb iron naturally--no need even for oral supplements. After the first infusion, your daughter will begin to feel better immediately. I can tell you that your daughter is suffering greatly from having a low ferritin level--she probably doesn't even remember how it feels to feel healthy and energetic. Please find her a doctor ASAP who can prescribe the infusions--having a low ferritin level is dangerous.

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Yep. Fire the lot. Your daughter was dx via endoscopy- that supercedes any blood tests. Celiac is permanent. While it frequently does go into a "silent" stage, your daughter still needs to be on a gluten free diet for life. Hopefully the errors in her doctors' judgement have not caused permanent harm and once she is gluten free again, she will start to heal. Whatever you do, do NOT let them convince you she isn't celiac now!

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I hope that you and your daughter will recover well. Now, you should be able to get her to heal. I am thankful that you rediscovered by 12. Please keep us posted on progress.

DT

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Hello

My daughter is mid tests for suspected coeliac disease. I am finding it all quite confusing as one gastro says this and the other that. My daughter was diagnosed when she was 6 after becoming extremely anaemic and having a colonoscopy and endoscopy carried out. The results were very low grade and she has never tested positive to the blood tests. She did go on a gluten and dairy free diet and after two years her bloods were up. We moved country and saw another gastro chap who didnt think she was coeliac and took her off the diet. She has been on a normal diet for 3 years now and yet again her ferritin has dropped to 5. We are booked in for another endoscopy in a few weeks time.

I feel helpless with all this testing on my precious 12 year old. She is so tired and pale despite being on 200mg of ferrous sulphate. I just dont know what I can do to help. I would like a positive diagnosis whatever that may be and to just get on. I'm fed up with the undecisive side of this illness.

Any comments/suggestions would be very much appreciated.

Back bone, you need one. and you can teach your daughter to have one as well. I know that sounds harsh. But she may have permanent damage now, that the earlier dx would have spared her. Don't ever let a doc run rough shod over you or yours!

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I'm so sorry you are dealing with this, my suggestion is take her back gluten free immediately and find out about iron infusions until her levels are adequate to continue with iron supplements. Make sure when she takes iron, it is with adequate vitamin C since it helps the iron absorb.

I know how hard it is when doctors tell you different things, and as a parent you want to trust them as knowing the best. Sometimes that is not the case. I have been going through that with my 8 year old and we had to make the decisions that worked best for her, and our family, regardless of the doc that wants to make money off of scoping her every year till he finds the damage (that is quite surely there).

Has your daughter had a full celiac blood panel recently? If not, get a new dr, one that specializes in celiac if possible, and have her blood checked while she is still on a regular diet, checking for endomysial antibody and tTG levels. If you choose to do the endoscopy coming up, I am sure you will have positive proof if that is what you are looking for, but what I have learned is you don't need that proof when you already know the answer. Your daughter was diagnosed, over five years ago! The damage has continued to worsen, and her health will only continue to go down. I would be willing to bet she has serious damage to her intestinal villi.

Good luck to you and your daughter.

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