This is my first time on here but it is for my daughter I am requiring information for.
She was diagnose 5 years ago at the age of 26. She kept going to her G.P. with stomach and bowel symptoms for a while and they kept saying it was IBS.
Eventually she saw a Gastrinologist, her blood test for Ceoliac came back negative but when she had the endoscopy it was confirm she did have Ceoliac disease.
She has stuck to a strict gluten free diet.
Although the stomach and bowel symptoms improved with the diet she has not felt well since diagnoses.
She is constantly tired, to the point of exhaustion sometimes, has bad aches and pains, feels cold all the time, feels depressed at times and feels generally unwell.
The past 4 months she has developed other stomach problems where she is getting a bad dull nagging pain at the top of her stomach (different to the original pain) and heartburn and again the Doctors are saying it is IBS.
She has had a lot of blood tests taken at the surgery and always her ferritin comes back really low, as low as 9
She takes Iron tablets and it raises it to about 15, the Doctor then tells her to stop them. Her calcium has also been low which again she has taken supplements for.
Could anyone please offer any advice, and advice on what other supplements supplements she should take.
Any information would be really appreciated.
Many thanks browny
Written by
lucylocks
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Sorry to hear that your daughter is not feeling well. So often people are told that going gluten-free will solve all their problems. Unfortunately this isn't always the whole story.
After going gluten-free myself (following a diagnosis of coeliac disease), I found out I had a B12 deficiency and a vitamin D deficiency. Both of which made me very tired and contributed towards depression. I have found that I function better when these 2 are in the upper range of what the GP considers as normal. Hopefully as her calcium is low the GP will have already done a vitamin D test on her. If they haven't it's worth pushing to get one done asap. Even though I was already taking AdCal supplements I needed extra prescription strength vitamin D tablets every week for several months before I felt right.
In addition to the deficiency issues, I've had to cut out all milk products from my diet because I was cross reacting to them and having similar symptoms to being glutened when I ate things like cheese etc. Even the Lactofree free versions give me heartburn.
More recently I also found I needed to cut soya out of my diet because that was also causing severe fatigue.
You may want to read up on Underactive thyroid issues as well. Some of the symptoms can be similar to CD. According to James Brady and Ron Hoggan in their book called Dangerous Grains, 13% of coeliac's are also likely to have an auto immune thyroid disorder.
It could be also worth mentioning that the thyroid hormone T4 gets converted into it's usable form (T3) in several places in the body. I've read that around 20% of this conversion happens in the intestines. If your intestines aren't working that well, then I believe it may be possible for this process to be impaired - but your thyroid blood tests will look normal. Good luck running this idea past the GP though! If your TSH and T4 results fall within the normal range, then as things stand you are considered by the NHS not to have thyroid issues.
Health Unlocked have a good thyroid forum and a good B12 forum. They may also have information that could be useful to you.
By the way when getting blood test results back from the GP, it is well worth getting all the exact reading and their ranges. I've found out the hard way that phrases such as 'normal' or 'a little low but don't worry' sound nice but aren't actually that useful when trying to get to the bottom of what's going on health wise! Having the exact results allows one to be more informed. It's also very useful where hospitals are involved. So often the GPs and hospitals don't talk to each other - especially if it's across CCG boundaries.
Good luck with your daughter, I hope this helps you.
Many thanks for your reply, my daughter did have the Vit D test and it came back low end of normal range, and like you say her Doctor said it was O.K. She does take a Vit D tablet but maybe it is not strong enough, I will look at getting her a higher dose. She has been tested for hypothyroidism but again told results are normal.
I am in fact hypo myself so I know how Doctors look at results and say they are normal as the levels are in range.
I will tell her to get a B12 test as you say this also may need looking at. She does still eat dairy so maybe this is contributing to her symptoms.
Thanks again for the advice, you have certainly given us some things to look at improving.
Please do your homework if she is going to start self-medicating on large doses of vitamin D. I would urge extreme caution and preferably some extra medical advice. Vitamin D is a fat soluble vitamin and the excess is stored, rather than being excreted out of the body. This can cause issues if the large doses are taken over a long period of time. I was under a hospital consultant and had blood tests to ensure that there was no damage being caused to internal organs by taking such large amounts.
The part of the consultation for my Vit D deficiency that amused me most was when I was prescribed sunbathing! (and no I'm not joking!). The consultant told me to sunbathe for up to 20 minutes (minus suncream) every chance I got - because it's a very effective way of replacing vitamin D. A great idea huh! A bona fide reason for loafing around in the sun with summer on the way...
As for the diet, it's mostly a case of trial and error to get this sorted out. If your daughter does decide to exclude milk totally, then do get her to consider where she can obtain another natural source of calcium from in her diet. I was advised by the hospital dietician that relying on taking calcium supplements in the long term isn't really the best idea. In my case it's probably something I am going to be stuck with, at least for now.
Getting her B12 reviewed does sound like a good idea; and as I said before it certainly helped me. I now have regular injections to maintain a good B12 level and it means that I no longer feel like one of the Duracell bunny's friends - the ones whose batteries have run down! It's so frustrating when you see the rest of the world operating normally and you know you can't keep up. That's partly what being B12 deficient feels like to me anyways.
Take care and just shout up if you have any more questions.
Your Doctor's Vit D advice might sound surprising to you .... but it was sunny holidays and the effect of Vit D that actually led to my daughter's diagnosis at the age of 13 after 8 years of investigations! Her orthodontist (who had been seeing her on a regular basis for 3 years) noticed how much better she looked whenever we came back from holiday. It was his letter to our GP that made them actually believe me that she was underweight and not thriving .....
well, that was 7 years ago and she's now 21. My mother was Coeliac (diagnosed). My daughter had 7 years of investigations including a blood test for coeliac, but was never diagnosed despite classic symptoms - family member with CD, dropping down the weight centiles as soon as I stopped breastfeeding her, underweight, fragile hair and nails, constipation, diorrhea, extreme stomach cramps etc etc. In desperation, I decided to just take her off wheat. Just two weeks later, her doctors (GP, Paediatrician, paediatric gastro specialist) AND the orthodontist all remarked upon the clinical difference after giving up wheat and gluten but none suggested testing her for coeliac (!) I prepared meals packed with super foods (loads of fresh fruits and veg, nuts, seeds etc) to try and build her up. Within two weeks, she started to put on weight and the stomach problems started to rectify themselves, nails, hair etc strengthened. That was 7 years ago. Still, nothing would induce her to eat wheat or gluten but she's become something of a food and keen cook herself. Since then, I showed classic symptoms so I came off wheat and felt so much better. Went on again for the blood test, which was negative (doc said it often is), but couldn't face going back on the wheat for the biopsy. Since the only treatment is to give up wheat and nothing would induce me to eat wheat, my consultant diagnosed me undiagnosed coeliac/wheat intolerant ... which is essentially the same as my daughter. Would advise others to stay on wheat until blood test and biopsy are done as once you come off, you become more sensitive.
Thanks for your reply, my daughter's blood test came back negative but she had an endoscopy and it showed that she had the villi (not sure of spelling)
which confirmed diagnoses. I think like others have said she needs to look at other foods and issues.
Many thanks for your reply, yes I have read about keeping an eye on Vit D levels as too much can cause problems. Nice idea about sitting in the sun
but she is very fair so burns easily without sunscreen so 10 mins. is max for her. I spoke to her last night about what you said about dairy and she is going to cut it out to see if it makes a difference. She did say she remembers having a B12 test over a year ago and she thinks it was 500
She is going to ask for another one to recheck.
Best Wishes browny
Hi Browny,
Take a look at SCD diet (Specific Carbohydrates Diet). Apart from Hashimoto and low adrenals, I have low stomach acid and Candidia, which made me badly bloated for the last 10 years. 2 months ago I started this diet and bloated stomach is gone! 10 years of trying digestive aids, gluten free diet (which help a bit but not much), eliminations diets with no result but with SCD I could see a difference after a week. I have to stay it is quite strict and it seems difficult to start with, but it works. One thing to mention, I lost 2-3 kgs in the first couple of weeks, and after 2 months I lost 5kg, unintended. I suppose it's the effect of excluding complex sugars.
" It is a diet intended mainly for Crohn's disease, ulcerative colitis, celiac disease, diverticulitis, cystic fibrosis and chronic diarrhea. " as it says on the official website, but it is also found helpful for Candida and autism (as autistic kids often have leaky guy, candida, etc).
Here is the official website: breakingtheviciouscycle.inf.... you can order a book on Amazon. It is worth a try as it's not just a fad, but it's based on the chemical structure of foods. There are plenty of blogs with recipes out there, some you can find in the book too. The book also says about 24h home-made probiotic yogurt and which supplements to take once your guts starts to heal and is able to absorb them. I used to take supplements and iron (I had very low iron, it went up when supplemented, low again without supplementation) when my bowels weren't well and it was just waste of money as they weren't well absorbed. when you start healing your gut, the supplements should be absorbed better.
Many thanks for all the advice, it has given us lots to go on, I will read the links and email them to my daughter so she can read them herself.
We have often wondered about candida as she regularly gets thrush so we will now look it that.
Do you mind me asking what do you take for low adrenals as someone we know wondered if she could be suffering from adrenal fatigue. It's all so complex isn't it but we will read the links so thank you again for sending them.
I used to get thrush a lot and realised It was related to eating yeast and probably sugar. I gave up bread and other yeast/mold type foods (mushrooms, blue cheese) and also took probiotics. It really helped me. Good luck to your daughter.
As I am sure you are aware CD, IBS, etc are autoimmune issues. I was diagnosed as coeliac about 9 years ago, and within a week of going on a GF diet I was a different person - no more fatigue - or so I thought - it returned about 3 years ago - even though I was still on the GF diet. I have spent the last 30 months trying to find the way thru it again and the help has come from several sources - the dozens of blood tests showed up little to help, so mostly from outside the medical profession - the long and the short of it is we have an autoimmune that is not functioning properly and it can continue to find things to react to. As a result there will be toxins built up in our bodies which inhibit the functioning of our vital organs and as such our vitality. I have now adopted a gluten free paleo diet and also started with a liver and kidney detox course. That combined with a regular pro and prebiotic have made an enormous difference. I have also eliminated yeast and milk, though I do still have a natural yoghurt every 2nd day and a little cheese every now and then. Definitely no cafeine. It has taken about 6 months but this is the first time real energy has been restored for many years. Try and eat as much fresh food as you can and probably keep the root vegetables ( except carrots ) to a minimum. Fresh vegetable juices first thing in the morning have proven very beneficial. Hopefully you can find what works for your daughter. Fatigue is certainly no fun - I hope the energy levels start to rise soon.
I use a product called lacto-flora by neways. But any reputable health food store or online healthfood supplier should be able to provide you with a pro/prebiotic - generally you should store them in your fridge. The liver cleanser is also important for helping the body deal with built-up toxins - again if you dont want to go to a naturopath your local health food store should be able to help. For anyone with autoimmune issues, a detox should happen every 6 months. There are lots of various teas with either low or no caffeine, like peppermint, some green teas and my substitute when I am having tea is dandelion root tea - not cheap but I mostly drink filtered water - about 8 glasses a day. For the first 3 months you really need to be disciplined and stick with it - otherwise it will be 2 steps forward and 11/2 back - it isnt easy at first - but once you get into the good habit of it - it becomes easier to leave the bad behind. We have to acknowledge that our bodies have an issue and they dont function the same as most people - it is just the way it is. My dad is 96 next month and still going strong, driving, etc and he can eat anything at anytime. Unfortunately that doesnt work for me.
All the best - hope you can sort a regime that works for your daughter.
Many thanks for your reply, we are starting to understand now from the replies I have received it is not just a case of going gluten free. It is much more complex. Thanks to you and the other members who replied we have lots to look into and hopefully we can get my daughter feeling better.
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