Drastically changing your child’s diet without the advice of a health professional isn’t really recommended, especially when you are excluding something major like wheat/Gluten. But more and more I am hearing of parents, like us, who are struggling with waiting lists to get seen by dieticians or paediatricians and are taking things into their own hands. Here is our story so far.
Last November I posted about hoping O had an infection in his tummy, because if he didn’t there was a possibility he could be suffering from Coeliac disease.
Eleven months down the line and we are still yet to get an actual diagnosis. It took over six months just for him to even get an appointment with the paediatrician! Six months of screaming, six months of sleep deprived nights. Six months of constant nappy and clothing changes, even through the night.
By the time the appointment came we had managed to figure out that Soya was affecting him too so he was totally dairy and soya free, yet was still not right. We were quite lucky to get the same paediatrician O was under as a baby when he had trouble with raised liver enzymes and reflux so she knew us and is a really lovely doctor, which is always a comfort!
The paediatrician agreed that he could be coeliac but said that there was also the possibility of him having an allergy/intolerance to wheat or gluten, or something else entirely. But to start with, she arranged for some blood tests. One to see if he had the coeliac antibodies in his blood, a genetic test to see if he is susceptible to coeliac (even if he doesn’t have it now) as well as some others including a full blood count and a check of his liver enzymes just as a follow up review.
This was in June.
In July I had a call to say that we needed to up his gluten intake and go back in a few weeks to repeat the antibody test. which we did and suffered even more because of it.
By this point I’d had enough, it broke my heart every time I gave him something to eat, knowing that I was probably causing him pain and discomfort. So, without the go ahead from the doctor we made the decision to switch him to gluten free. After all, if the antibodies were going to be in his blood at all, surely two tests should be enough and the best way to diagnose an allergy or intolerance is to exclude the problem foods from your diet.
Theswitch would have been much easier if it had just been the gluten that was an issue but you see, just to make life super difficult for me, the majority of dairy free products are made with soya milk and the majority of gluten free products are made with soya flour or contain soya lecithins. So obviously it is a right pain in the backside trying to find foods which contain none of these things! It took us a few weeks and a lot of hiccups, but by September he was totally gluten, dairy and soya free.
Last week I was thinking he wasn’t really improving that much and that we should just jack it in, when a family friend asked me whether he could have some biscuits. I said yes, just to see if maybe I was wrong and it wasn’t the wheat after all (this brand had no dairy etc in them). Lets just say that after some extremely stinky nappies a grouchy, lethargic toddler with a gurgly, swollen tummy and a sleepless night, my faith in my own intuition had been restored!
I guess it will just take time for the gluten to completely leave his system and for his tummy to recover. Either that or there is something else affecting him as well, which I would rather not contemplate right now!
Let’s hope that we get another appointment soon so we can get a real diagnosis. I’m sure the doctor will disapprove of the fact I have removed wheat and gluten from his diet without her say so, but at this moment in time I am sure going gluten free was the right choice we could make for our son and I would do it again in a heartbeat.
Have you excluded something from yours or your child’s diet?
Claire says
September 28, 2015 at 10:15 pmI hope you get a real diagnosis soon.
Best wishes
Claire
x
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Tori Gabriel says
September 28, 2015 at 10:20 pmOh, I feel for you! I have Crohns Disease and while I have a specialist the wait to see him is ridiculous. I had an appointment in April which was cancelled by them for no reason they could give me. They offered me the next available appointment which is apparently December! I self medicate now and adjust my dosage and diet as I see fit. It works for me. I’m really sorry but you may learn (like I have) that you’ll face this battle on your own.
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mami2five says
September 28, 2015 at 10:42 pmThat wait is awful! You are totally right, most of the time we seem to left to work things out for ourselves which really isn’t how it should be! I hope they manage to squeeze you in before December! xxx
Sarah Bailey says
September 28, 2015 at 10:43 pmI hope you get a diagnosis and some answers soon. It must be so hard for you all. x
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Serena says
September 28, 2015 at 10:54 pmIt must be so hard to not know what’s wrong with your child. Hope you find out soon.
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Stephanie says
September 28, 2015 at 11:02 pmThat’s shocking that it’s taken so long so far to get where you are. Hope you get a diagnosis soon but I think I’d be like you and manage what I gave them. As adults we avoid food that upsets us so it seems sensible (to me at least) to do this for your children as long as they’re still eating a healthy and nutritional diet.
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Kacie says
September 28, 2015 at 11:52 pmI know someone else who this happened to; they were struggling to get a diagnosis and so they paid to have an allergy test done privately xx
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The London Mum says
September 29, 2015 at 12:11 amOh gosh I can’t imagine how hard it must be to feed child with obvious allergies, especially when you haven’t had a confirmed diagnosis. Sounds like excluding stuff froths diet is the sensible thing to do, it would be impossible to feed your child something and then sit back and watch them in pain. I hope they diagnose him sooner rather than later just to give you all peace of mind.
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Cathy Glynn says
September 29, 2015 at 7:32 amThis must be so hard for you all. I cut all dairy out of my son’s diet when he was little and saw huge improvements in his well being. Good luck in a diagnosis x
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Ana De- Jesus says
September 29, 2015 at 11:33 amI am sorry to hear about the doctors it makes me mad that you are not being supported and you made the right decision excluding certain items from his diet. Poor little thing!
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Renna says
September 29, 2015 at 12:08 pmI had to cut out eggs and oil from my little lady when she was one, as she had an allergy flare up which was awful, but, the Dr didn’t know what caused it. So, I stopped giving her some foods, and after a few months, I tested them and ….nothing. So, I still dont know.
It’s awful isn’t it. I don’t wait for Drs….do what you feel is right.
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Codie says
September 29, 2015 at 12:46 pmOh it must be awful just having to wait 🙁 At the end of the day, Mums know best and if it’s helping him at all then it’s worth it x
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Jenni - Odd Socks and Lollipops says
September 29, 2015 at 2:23 pmI am having issues with drs and dietitians for my daughter at the minute. We are currently waiting for another appointment in November which is such a long time for her to wait. I wish there was an easier way
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Lorraine says
September 29, 2015 at 4:00 pmOver six months to be seen?! The poor fellow! I personally don’t rely on doctors because I know my body better than they ever would but I hope that you’re able to find out what’s really affecting your little one.
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Rachael says
September 29, 2015 at 4:22 pmyou should read my friend tanyas blog (tanyas healthy living if you want to look it up), her little boy has a few different allergies & she posts lots of interesting advice and recipes on how to deal with it x
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linda hobbis says
September 29, 2015 at 4:53 pmHope you get a diagnosis soon. I’m thinking of going gluten free too but it seems like such a huge undertaking. It must be quite tricky with a little one.
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Katy (What Katy Said) says
September 29, 2015 at 5:04 pmWe spoke a lot about this while waiting for those trains of ours didn’t we? I am so glad you are seeing an improvement. LJ has been soy/dairy/gluten/wheat free for ages now and we don’t have a diagnosis but as you know, instinct is amazing and when you see an improvement you know youve done the right thing. LJ seems to struggled sometimes without explanation and I just wonder if it is traces found in things that aren’t listed in ingredients- who knows! Either way the whole thing sucks and I just hope they both grow out of it. Where do you shop? We shop in Tesco but I get all her stuff from Sainsburys as their free from range is amazing!! She had a chicken pie the other day and you should have seen her face!! Oh and did you know that sausages have wheat in them???? I didn’t- just assumed they were pork but no, got wheat starch so have to get free from sausages too as they are her fave!!! x
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leeshastarr says
September 29, 2015 at 6:04 pmI hope you finally get some answers. It’s hard to have an intolerance to something that is in a lot of foods. It’s a shame that you’ve had to trial it out on your own to find out what the cause is. O isn’t an adult and therefore should have a higher priority, I believe. It breaks me to see a baby/child in pain.
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Lydia says
September 29, 2015 at 8:12 pmahh sorry to hear your little one is poorly. I hope you get a diagnosis soon. Sometimes as a parent you’ve just got to do what you think is best – doctors or no doctors. Good luck with it xx
North East Family Fun says
September 30, 2015 at 1:03 pmAh I hope you get an answer soon lovely – I know it takes a while for gluten to completely leave your system which is frustrating 🙁
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Rebecca Smith says
September 30, 2015 at 9:08 pmFingers crossed you get a diagnosis soon. Must be so stressful and frustrating not knowing the answers x
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VaiChin @RamblingThroughParenthood says
September 30, 2015 at 10:27 pmIt can be so unsettling just wondering what is going on. I hope you get a proper diagnosis soon.
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Karen (@karenjwhitlock) says
October 1, 2015 at 9:15 amIt makes me realise how lucky I am that mine don’t have this kind of food intolerance. Emily has an intolerance to salmon, but that was easy to figure out as on the three occasions that she ate it, she projectile vomited a few hours later. Not enough is being done to help with more complex situations such as soya and gluten. Hope you get a diagnosis soon x
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Ickle Pickle says
October 1, 2015 at 6:11 pmOh I feel your pain – Pickle was similar – i knew he was dairy intolerant within two weeks of birth (my older son is too) but he just had the most super sensitive tummy – everything upset him. Now he is almost 3 it is fine (fingers crossed) Kaz x
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Zena's Suitcase says
October 1, 2015 at 7:25 pmI think dietary changes like this are really helpful, but they do take time to fix things. Stick with your instincts as it sounds like you are on the right lines
Kerry says
October 3, 2015 at 12:15 pmI hope you get a diagnosis soon! We don’t have any dietary needs in our family but I do have a close friend who is gluten free as is her son and she’s always trying to find new recipes which must be hard x
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Sarah Howe says
October 4, 2015 at 6:39 amWhat a nightmare! I hope you can get a professional diagnosis soon and your poor little one starts to feel more comfortable. My only concern as a dietitian would be ensuring by cutting out the dairy and gluten would be ensuring the remaining diet is nutritionally complete so hopefully you will get a dietetic review too xxx #sundaystars
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Mrs C says
October 4, 2015 at 6:58 amSounds like you’ve all had a rough time with it. Its hard enough when adults don’t know what’s going on in their bodies but when it littlies is down to the parents to make those difficult decisions. Hope things improve x
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Mummy Tries says
October 4, 2015 at 7:09 amFood issues are a nightmare, I’ve suffered myself all my adult life and my eldest had an exclusion list as long as your arm at one point. We’ve been following the all natural GAPS Diet for 18m now and my recent tests came back comply clear, which I’m over the moon about! I cannot recommend it highly enough, you might find my second blog interesting: mummytriesgaps.WordPress.com
Very best of luck #sundaystars xx
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Mummy Tries says
October 4, 2015 at 7:11 amhttp://mummytriesgaps.wordpress.com
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Julia @ Rainbeaubelle says
October 4, 2015 at 7:12 amOh goodness poor O. It certainly does sound like you’ve cracked it doesn’t it? It seems like the gluten is the problem, I really hope you get a diagnosis soon, then you know where you are don’t you. You’re doing the right thing! xx
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Mackenzie Glanville says
October 4, 2015 at 7:31 amWow you have been through such a hard time, your poor little one, sore tummies are awful. It sounds like you are making the right choice #sundaystars
New Mummy Blog says
October 4, 2015 at 8:44 amOh what a nightmare, and your poor little boy! I hope you get the next appointment soon, surely they should have arranged it at your previous visit, they’d know how long the tests take. It’s appalling children having to wait so long, fingers crossed it’s all sorted soon #sundaystars
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becca farrelly says
October 4, 2015 at 11:23 amAww, parenting is so hard at the best of times when you have a child that can eat anything and everything (we are very lucky!!) but when you have a child that needs a special diet I cant imagine how tricky that is on a daily basis. I feel for you and I also know from friends that its impossible to get a diagnosis quickly, these things seem to take so long! I hope you get the right diagnosis and that you little one is able to get on with life! Good Luck 🙂
#sundaystars
Random Musings says
October 4, 2015 at 1:07 pmThe waiting is the worst part – at least once you know what it is you can start dealing with. I totally would have done what you did. It’s ok the doctors moaning but when your baby is in pain why would they expect you to wait so long! Thanks for hosting #SundayStars
Debbie
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Chloe says
October 4, 2015 at 1:09 pmOh my gosh I can’t believe how long it takes to get a diagnosis! It’s good you trusted your intuition. I don’t think mothers intuition is ever wrong.
You said you didn’t notice a change for a while after cutting things out, but I think it will take a while for the body to adjust. Lately I’ve uphauled my diet and started to clean eat (more for mind rather than body) and for weeks my skin and hair have suddenly turned atrocious. I’ve spoken to a professional and apparently that’s completely normal because your body is getting rid of all the toxins and readjusting to your new lifestyle. Maybe you didn’t notice the difference because something similar is happening.
I hope it all works out Ok and you manage to find lots of foods he can eat. xx
#sundaystars
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Sugar&Rhubarb says
October 4, 2015 at 4:15 pmoh goodness it sounds like such a difficult time. I really feel for the emotional aspect of it all too. It’s just so awful seeing them in so much pain and not knowing the cause definitively – it really causes so much stress. Good luck. Our baby was allergic to Cow’s Milk and watching her writhe and scream in agony after a feed and then come up all over in hives was just insanely difficult.
#SundayStars
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Kat | Beau Twins says
October 4, 2015 at 7:12 pmIt’s unbelievable they allowed O to suffer this was for that long. I am gobsmacked! Our children come first. I stamp my feet and create if I feel the girls need a doctors visit. I am so shocked and sorry you had to wait this long. It’s not surprising you took it into your own hands hun – good job you did. It’s not like you have any better to do is it? Sigh!! A mother shouldn’t be put in this position. You have enough on your plate. But we can’t sit back and watch our kids suffer. Good for you huni. To be honest, I need to rethink gluten intake. It bloats me and I suspect the girls. May have to give it ago. Fab work lovely and thank you for hosting the amazing Sunday Stars linky! 🙂 xxx
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Megan - Truly Madly Kids says
October 4, 2015 at 8:07 pmOh gosh, your poor baby and you! My son has bad eczema and I’ve often thought about diet …
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Jacqui @ Mummy's Little Monkey says
October 4, 2015 at 11:20 pmMy niece has just been diagnosed with Type A diabetes AND coeliac disease. Tough time for my sister, and a total diet overhaul for the entire family, but she’s noticed a huge difference in her daughter’s health and wellbeing. Hope the same happens for you! x
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mami2five says
October 5, 2015 at 9:41 amOh my goodness, that must be so hard for your sister! I’m glad she’s noticed an improvement already xxx
Anna says
October 5, 2015 at 2:47 amI often go for gluten free meals when I ma diet, despite the starch in it I know there are better inegriedience.
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Lady Nym says
October 5, 2015 at 5:55 amIt all sounds exhausting. Both my boys have suffered from horrible stomach problems and lots of pain and it’s heartbreaking. The symptoms they had didn’t/don’t really fit with an allergy or intolerance, though, so we didn’t have to try cutting out food groups. We’re vegetarian and Tyger has ASD, which means he has a lot of problems with food textures. so reducing the food he can eat even further would have been extremely hard. Luckily Tyger has mostly grown out of his stomach problems and Bear has improved.
I hope you get a diagnosis soon. The uncertainty and waiting is frustrating.
Thanks for hosting #SundayStars
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teacuptoria says
October 5, 2015 at 6:35 amWow this must be very hard for you and him. I’m trying to avoid gluten because it’s bad news for autoimmune diseases and I find it hard to sometimes fill myself up. I’m trying to avoid processed food so I don’t go for gluten free bread or cereals. It’s mainly fruit, veg and meat! You were obviously right to trust your intuition. Eating clean sounds like the way forward for him. Good luck! xx
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Mrs H says
October 8, 2015 at 7:32 amOh dear Katie, poor O. It is terrible that you have to wait so long for a follow up appointment. I think I would have done exactly as you have done and remove gluten and wheat from his diet. Poor O being allergic to gluten, diary and soya. That has to be very difficult. But here’s hoping that he doesn’t have caeliacs disease. Thanks for hosting #SundaysStars lovely lady. Hugs Mrs H xxxx
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Katie / Pouting In Heels says
October 9, 2015 at 2:18 pmOh Katie! You must be tearing your hair out. Really hope you get a diagnosis soon. Well done you for taking the action that you can take. Must be very difficult though. Fingers crossed for some answers for you soon. xxx
#SundayStars
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