Coeliac levels high in blood tests but sticking to diet religiously!!???

Hi all, my daughter was diagnosed at 6 yrs old, after 4 years of drs telling me there was nothing wrong! Anyway shes now 18, sticks to the diet religiously!! She spent 6 weeks in hospital last year with D&V only to be told she wasnt sticking to her diet! Very frustrating & upsetting!! Then labelled with anxiety also. Her bloods reflect high levels despite sticking to the diet!!! We are at a loss now as doctors insist its her own fault! She continues to stick to her diet, no gluten, wheat, barley, rye or even gluten free oats (as we're told they cause the same reaction) she is deficient in iron & folic acid & takes tabs for this daily. Are we missing something here?? Its so upsetting for her as drs basically tell her shes lying about sticking to the diet. Yes she is anxious but if youre 18 & cant leave the house without a packet of imodium to hand then why wouldn't she be! Anyone got any suggestions??? Thanks in advance

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  • Hi. Have you tried cutting out all grains in addition to gluten? Many can cross react and be just as damaging as gluten. So this would include things like corn, maize, buckwheat, quinoa, etc. In fact all the stuff commonly packed into gluten free products. Also dairy and soya can be a problem in those also sensitive to gluten?? If you google anti inflammatory /autoimmune diets there are loads of foods can cause problems. My son is 13 and has an autoimmune disease. He is totally grain free apart from white rice. He is also dairy free. We avoid all processed foods and buy organic meat and vegetables. I try to get as much fruit and veg into his diet as possible with every meal, even breakfast. Since making changes to his diet he has managed to come off all his immunosuppressant medication and has started growing again. His autoantibodies levels are slowly reducing. There is obviously something in your daughters diet that she is still reacting to, it's just a matter of trial and error to find out what it is. Maybe keep a food diary to see if you can identify triggers to bad episodes. Also if you can find a good nutritionist (with an interest in autoimmune diets) or functional medicine practitioner in your area to offer advice to help you through that would be useful but you will probably have to pay for this. We are in Yorkshire, UK and I know a few local to us if that helps but I'm sure you could find someone in your area. Good luck. X

  • Thanks Lizzie, she did try a lactose free diet for a while with little improvement! I guess yet another food diary will have to kick in by the looks! Its just so hard for her as a teenager & so limiting. She also has a severe nut allergy so theres a lot of alternatives that she cant have due to that also! Shes so tired all of the time & can literally sleep the clock around. She is under a dietician & has been for years but she just gets asked if shes sticking to the diet & sent on her way! The gp is pretty useless aswell tbh. Id gladly pay private just for some answers so she could live a relatively normal life x

  • Hi there, so difficult to live a normal life with that problem for your daughter , I'm wondering if sugar maybe the cause? Also various

    veg can do it. I dare not have Cauliflower or Asparagus for example, black coffee and overcooked meat too.

    Everyone is different. Good luck finding the culprits.

    Kim

  • Thanks Kim, yep its going to be another process of elimination once again 😩 X

  • Is she just having tablets for iron and folic? Her b12 might be low and need injections. Especially as she is coeliac and obviously still got tummy problems.

  • Hi Lisa, yes she has tablets for Vit D, folic acid & iron. The GP says her bloods dont show b12 deficiancy. I was kind of hoping this would be the solution to the lethargy to be honest! Apparently her thyroid is borderline but not enough to be treated. When we saw the consultant at the hospital he said she was borderline due to her pituitary gland being a bit 'funny' (his words lol)

    Were not new to all this as she was diagnosed at 6 years old. Despite 4 years of being made feel like i had munchaussens by proxy & was imagining how ill she was! Because she wasnt small for her age, under weight or any kind of text book stereotype! Its now been 12 years of hitting brick walls as far as doctors are concerned. I cant seem to find one that knows a whole lot about CD or is vaguely interested :(

  • Sorry to hear about your daughter and I can imagine how hard it must be for her. My daughter was diagnosed towards the end of last year aged 11 so we're just going in to the teenage years. We haven't managed to resolve the D issue for her yet - she is lactose free but she has kept oats in her diet for now but they will probably have to go in due course - it was too much for her to cope with all at once. I have had autoimmune disease since childhood myself so I do know what it's like to grow up with this hanging over you. I haven't done so yet but I agree with LizzyCee about seeking the help of a functional medicine practitioner although hard for us to find the money but would probably be worth it. I am considering the Autoimmune Protocol diet (AIP) for both of us - I'm not coeliac but cannot eat gluten due to Sjogrens which is closely associated with coeliac disease (20% of people with coeliac have Sjogrens and between 5-15% of people with SJogrens will have coeliac).

    I hope you manage to find some answers for your daughter x

  • Thank for the reply! I hope your daughter gets on ok. Its a lot to change, especially during the teenage years when all their friends are popping out for a burger etc. We are at the alcohol stage now but thankfully she is T total as its just another mine field & just not worth the hassle. We are going to try & go private, not really sure where to start but with the aid of google! Or hopefully someone on here can recommend a specialist close to Birmingham. Ive not really looked into sjogrens so maybe that is a possibility?? Theres no history of CD in our family though bowel problems are rife- both my mom & brother have had colostomies due to peritonitis but still no reason as to why. My son has ibs & so do i, so i think a lot has gone undiagnosed throughout the generations.

    Xx

  • Hi Tania, this is sad reading, I mean going out with Immodium instants at 18! so poor her. often coeliac who are diagnosed as children appear grow out of it and in their teens due to the hormonal changes. So its interesting that an 18 year old is suffering so much and to me this would indicate that your daughter is very sensitive to gluten.

    Now gluten free only means below 20ppm and you already avoid oats so what about malt in breakfast cereals and in some pickles like Branston. Then there are wheat derivatives which are usually below 5ppm and artificial sugar can be a wheat derivative so I look at whether your daughter has low cal cola's and the like. Artificial sugars are a known trigger for IBS as well.

    Once you start to look into wheat derivatives they get everywhere like E no's caramel is one and citric acid is another. So I'd try and get your daughter to eat as much unprocessed food as possible and one good food that might help her is quinoa, it is a seed that is used/cooked like rice except it packs a nutritional punch by being a complete food, just buy one thats certified as gf.

    I agree about keeping a food diary and if your daughter goes on an elimination diet then I'd do it with the guidance of a nutritionalist.

    Good luck and here's a link to the HU site for healthy eating:

    healthunlocked.com/healthye...

  • Hi Jerry, yes to be honest it seems to have got worse as the years have gone on! She avoids malt also, wont even have vinegar which is supposedly ok. She doesnt tolerate breakfast as a rule & never has. If she eats too early she gets severe stomach cramps & is back in the toilet. That has always been the case no matter what food ie, cereal, toast, fruit, yoghurt. Its almost like her gut isnt awake & will repay her with pain for daring to eat. I cook from fresh but she has eaten the odd gf m&s meal purely for quickness. She is a good eater, always has been, not at all fussy thank god! Its baffling as ironically she eats all the good stuff & still is plagued with cramps, d&v & most recently reoccurent uti's! Another mystery to the GP & yet another referral to a different section of the hospital.

    I was also told that her hyper flexibility is linked to coeliac disease (she has dislocating knees which have been operated on) & also her hips which she refuses to have done due to the possibility of adverse affects! She has dermatitis on elbows, knees etc & also a high heart rate which has reached 140bpm but no abnormality in the actual function of her heart. Swiftly they labelled her with anxiety disorder, though challenged on this many times as she is not anxious when this happens & sometimes wakes from sleep with it! Sorry to drone on. I need to find a specialist who can join the dots, so to speak!

    But yes yet another food diary will be starting tomorrow!!! X

  • Ps. she does eat rice, rice noodles....she doesnt drink lo calorie drinks purely because ive never thought those kind of additives to be good for anyone. Im a bit scared of quinoa too tbh, purely because of it being a grain. Thanks for your advice Jerry, i will take it all on board. I think we just need to find a free from island & move there lol!!

  • Have you come across 'refractory coeliac disease'? we've had many posts on here and it sounds familiar, so here's a link:

    healthunlocked.com/search/r...

    Quinoa is a seed/pseudo grain and here's a link about it as it is very nutritional and I eat it and I'm very sensitive to gluten:

    bbcgoodfood.com/howto/guide...

    And it sounds to me like you feed her well so good for you.

  • Thanks Jerry, i will take a look at those links! I mentioned refractory cd to the gastro dr on her last admission............apparently because its so rare she couldnt possibly have (repeatedly bangs head against wall 😩) Go figure that one! In my knowledge rare doesnt mean impossible, but there you go, suffer on & dont question it! As you can tell im a lot more caring that that so i wont rest until i get some kind of answers! Hence looking for a private specialist who gives a damn.

    I'll read more about quinoa & maybe give that a try. Yes im blessed she eats so healthily as i also have a 16 year old who is intolerant of anything remotely healthy but it pretty illness free! The irony!!

  • Just saw you mention hyperflexibility - do you already know about Ehlers-Danlos Syndrome (there is a HealthUnlocked community for it on here). It does have an association with coeliac and interestingly with gastrointestinal problems:

    ehlers-danlos.com/2014-phys...

    ncbi.nlm.nih.gov/pubmed/273...

    Might be worth taking further if you haven't already - you could ask on the EDS HU community for who your daughter should be referred to.

  • Hi Tania have the hospital ever mentioned an iron infusion? My teenage daughter, coeliac had this done privately at The Iron Clinic in London. She thinks it great because she used to hate having to take iron tablets as they upset her digestion.

  • Hi Cat,

    No its never been mentioned whatsoever! Shes been on iron for years now & if she misses one shes practically comatosed! I'm going to ask about this! Thanks very much x

  • Hi

    What a blessing your Daughter has you to fight her corner!

    Have a look at Micki Rose's website purehealthclinic.co.uk, loads of info on there, some you pay for other bits you don't & also access to tests & Micki will do a consultation & she is fabulous. There is also a linked facebook page & the people on there really know their stuff & some of them use private consultants/nutritionalists/naturopathic nutritionalists etc who are experts in these sort of things, so they can point you in the right direction of who to use etc.

    Also if you are considering the autoimmune protocol for the paleo diet, to try & work out what else is causing these issues, Sarah Ballyntyne does a great book, with a similar name to the above, available on amazon & also has a website calles paleomom.com

    In the meantime, she might find Enterosgel useful to help line her stomach & also help with the IBS/ diaorreah etc It is available from Lloyds Pharmacy & is an absolute godsend for me. I think there is a special offer on at the mo with £5 off the larger tubes, which is handy as it is expensive at £19.50 a tube, but in my opinion, so worth it. You can also order it online with Lloyds pharmacy if there isn't one near you.

    Good luck, you will find the answer, so keep going.

  • Thank you so much!!! Im going to look into all of that this eve when i get home from work. I know theres got to be answers! Thanks for your help xx

  • Hi Tania17 - Theres loads of great advice here, and I hope you manage to figure out what is still contaminating!

    I'm sure you've already done this, but, have you checked all the tablets and vitamins? I found out that many of them have a wheat coating, for absorption in the body...!!!

    I'm not even sure how you do find out, as I think it is one of those things that they list under a different name.

    Also, probably another thing you are already doing, but is there any chance her food is getting contaminated at home? Does she have a separate toaster, jams, butter, utensils etc? I have to stand over my partners children when they're here, as despite their genuine intentions to not get crumbs everywhere, and use the GF butter, they still will.

    Your daughter and I sound very similar- I have hyper mobillity, absolutely could not eat in the mornings till I really cracked down on contaminants, and fight of psoriasis continuously. I also know my anxiety and mental health issues were much worse when I was being glutened.

    Would she be open to going back to a really basic diet for a few weeks? roasted veg and white rice etc? Then you could introduce food she eats regularly, and see if any of them cause a flair. It's no fun, especially when your a teenager and feeling pretty rubbish anyway, but if it helps?

    I really hope you both manage to find out what's going on.

    All the best.. :)

  • Hi Victoria-ann,

    To be perfectly honest i havent checked the tablets & its purely because they were prescribed by the dr & on prescription. Silly me!! Now why would i even imagine that the GP wouldve checked this!!! I will look into it today & god help the gp if they are unsuitable!!!

    Were pretty hot on the cross contamination thing & keep everything seperate. But i think youre right, it may be a case of going completely back to basics!

    I cant believe there is so much related to CD and soooo many doctors that dont link it all up! Yes you sound as if you have similar issues. Its all a mine field but its so good to hear from other people who have the same or similar struggles. Thank you!!! X

  • Yes it's so frustrating that the drs seem to know *nothing*

    And they won't even think to check medication, unfortunately. :(

    I was diagnosed at 2yrs (after being quite close to dying in hospital) and I was told I could have 'treats' and they would regularly take me off my diet to see what would happen. When as a teenager I had crippling mental health issues, it never ever came up it might be that I was eating gluten. So frustrating. Only found out last year about how coeliacs shouldn't even be touching the stuff. Has made such an impact in my life to take control of contaminants.

    When I was 18 I went totally back to basics, so I know how frustrating it is. But, i found dairy was not my friend. I haven't eaten dairy since. It makes me SO sick. Even the lactose free stuff. I also cut meat out until this year (that's almost ten years!!)

    Her body is probably really damaged, so anything that requires effort to be broken down will make her sick. (Or that's what I find, at least)

    I really hope you guys manage to get up and over this x

  • Its just so weird after soooo many years of being ok on the diet, barr the knees ops. The last 3 years have been hellish. Typically was around gcse time which she got through (also had lots of issues with bullies etc which was bad enough) then went to college which was hard & then missed out on her uni place due to being hospitalised. It all really got her down :( shes a strong willed girl but when your body gives up what can you do x

  • So sad to read, I can't imagine how she's feeling. Let her know there's lots of people here sending her good vibes, and really rooting for her to win this fight too.

    Yes, it's so hard when your body can't do what your mind knows it needs too.

    Keep being a pest at the GP and the dietician. X

  • Thanks for the support Victoria-ann, its really appreciated. I have been telling her & she said, though horrid for everyone, its reassuring to know shes not going crazy & shes not the only one who is experiencing these problems xx

  • Hi Tania, my 18 year old son was diagnosed with Coeliac Disease last year after 4 years of paediatricians and GPs appointments. I was considered an anxious mother so I know exactly what you mean when you said you were made to feel you had Munchhausen's by proxy. One locum paediatrician almost shouted that it is not Coeliac Disease when I suggested it. My son did not fit the textbook description of CD either. Tall etc.

    I'd recommend reading Isobel Knight's book, Living with Hypermobility Syndrome. I just looked her up and she has written a few other books, one about Ehlers Danlos Syndrome. Your daughter's high heart rate and anxiety could be because of her hypermobility. My Coeliac son is quite flexible but he hasn't got hyperextending joints as far as I can tell.

    I have been reading about low stomach acid (hypochloridia) which seems to appear together with Coeliac Disease and Thyroid conditions in particular. Read about it and see if this could be your daughter's problem. All the Best.

  • Low stomach acid would explain why iron and folate are not being absorbed despite her eating healthily and being strictly gluten free.

  • Which nuts is she allergic to?

    My son has hazelnut allergy. But also can't eat the Deadly Nightshade family of veg. So can't eat aubergine, peppers, raw tomatoes or potatoes without getting diarrhoea.

    No doctor has confirmed the link to me - but that is his experience

  • Hmm thats interesting! She had a anaphylaxis from a peanut & scored 9.5/10 & so was told to avoid any kind of nuts & was told she'd never grow out of it. She did ask to be retested again last year but the gp messed up the referral & it never happened. Something i need to chase again!

  • People allergic to peanuts can also be allergic to lentils and other foods. On holiday just now, and can't remember exactly. But you could easily find out from Google.

    My daughter has a similar level of allergy to peanuts, and we were told no point in retesting as at that level they won't grow out of it

  • Yes we were told the same but its been 14 years now & in my experience drs dont always seem to be right so were going give it another shot x

  • Sounds so awful for her but there are lots of helpful comments here. Thought I would just add something related to my experience just in case. I know your daughter is religiously following a GF diet but I wondered if she was eating any Free From products or confectionery as these often contain glucose syrup which can contain wheat. Some confectionery is seen as being gluten free but I have had the most dreadful reaction to it - just as bad as being glutened in fact. I hope you manage to work something out for her - it must be so distressing for her. Good luck to you both!

  • Yes ive read that before. Its just an ongoing nightmare of cutting things out. She was tube fed in hospital last year & within seconds they had to drain it back out as they realised it didnt actually state nut free! This is what your up against with so called professionals! Leaves you wondering who to turn to! X

  • Is your daughter's toothpaste gluten free? Has she also been to an allergist to be tested for allergies? Just a thought! Good luck with your daughter and her recovery. She is lucky girl to have you in her corner!

  • Omg toothpaste?! Not something ive ever considered!! Shampoos, body lotions etc yes but never checked toothpaste!! Im on it, thank you! Xx

  • Yes some toothpastes do contain gluten here in Canada. The Colgate toothpaste is gf. If your daughter has diahrea after breakfast thats generally when you brush your teeth too. Just a thought!

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