Newbie: mother to coeliac kids

[Midwitch]

Hi everyone, I feel so relieved finding this forum. A quick intro: I am in New Zealand and incredibly grateful to have found a huge amount of gluten free foods available, however two of my 7 children have just been diagnosed as coeliac. This came about because my number 6 child aged 12 has been sick for a long time. He had severe reflux from birth and was heavily medicated but still not well controlled. I breastfed him and was totally dairy and wheat free as well.  He recovered from reflux more or less by 2 years and was weaned off his meds. He remained very thin but active and reasonably robust. His behaviour has always always been an issue. I thought the pain of reflux had made him an angry confrontative little boy and psychologists agreed with me. He was recently diagnosed as ODD but that same doctors suggested we test for food allergies. All were negative.  

 

In the last year he has become extremely lethargic and unwell, losing weight and sometimes fainting. Unfortunately due to his ODD behaviour he refused testing or medical advice until he was really sick. His weight is under the 3rd percentile and his BMI is 12.  In the past month he has only managed to attend school 1-2 days per week as he faints after a few hours at school, and spends most of the day and night sleeping. 

 

 Finally we have a diagnosis with the blood tests and his biopsy/endoscopy is on Tuesday. As soon as his bloods came back highly abnormal my GP and I decided to test Mr17 who has always been a vomitter and is also very thin.  This child has had severe depression and anxiety and suicidal tendencies and yes, he also positive and waiting on biopsy. 

 

On the one hand I feel SO relieved that they have been diagnosed. I actually was living in fear that I was watching my younger boy fade away. I was beginning to think he was going to die soon given his weight loss.  I hope, pray and believe that both will have much happier attitudes once they heal their guts on a strict gluten free diet.  I believe that suffering the way they do has made them cranky and opositional - well I hope that they might both improve any way, lol.  

 

On the other hand I feel somewhat overwhelmed.  Due to the age difference they are going to different hospitals for their biopsies, so the first is on Tuesday but the other is two weeks away - this means I have to start one gluten free but not the other. Meantime I still have 5 of us in the household who are not coeliac and while myself and my daughter will go gluten free in support, the youngest will struggle has he has food allergies that mean he eats a narrow diet as it is. When I think about cross contamination I feel a little overwhelmed. I am trying to get it through to the others how important it is to take extreme care.  

 

Thanks to this forum I now know to make them dairy free for a while to let their guts heal - I will get a day with a dietician after the biopsy and I guess they would have suggested this too.  Unfortunately the 17 year old feels kind of resentful that he is now going to have to change his life  so much. He is angry and not happy about not being able to eat with his friends. I can only reassure him it seems hard now but it will get better and at least he will feel physically better.  

 

Tuesday cannot come fast enough for me: I feel like I have been feeding my children rat poison all this time and even though I know its killing my 12 year old, I am continuing to make him eat it until his biopsy. I feel sick every time I hand him food with gluten in it.  He is so sick now he has been asking for a week when he can go gluten free... 

[kareng]

So the rest of you have been tested for Celiac and are negative?

[cyclinglady]

Welcome to the forum! 

Karen is right.  All first-degree relatives need to be tested even if they do not have ANY symptoms.  Yes, that's right.  Some celiacs have no symptoms at all.  Some are overweight.  So you, and your son's father need to get tested along with the rest of the siblings.  You can encourage Grandparents to get tested too.  You can develop celiac disease at anytime in your life!  Remember, this is a genetic autoimmune disease that is triggered by gluten (unlike Lupus or MS where triggers are not known) and something in the environment (like an illness, stress, etc.) turns it on.  So, you may have MORE people who have celiac disease in your household.

Some folks have a shared household.  I did for years (hubby is gluten-free), but it was only me and my small daughter. I was very careful and she didn't do anything in the kitchen.  Then I was diagnosed (what are the odds?) and we went 100% gluten free.  My kid was getting old enough to help in the kitchen and honestly, I couldn't trust her to me her Dad and me safe even though she's a great kid!  I buy her pre-packaged foods that have gluten to stick in her school lunch.  Otherwise, she eats gluten free.  She loves gluten-free and even asks for my gluten-free chocolate Mayo cake -- anything homemade over store-bought gluteny things.  

We eat lots of whole foods: meats, fish, veggies, fruit.  We avoid processed junk food now which is not really good for us anyway (save it for treats and parties).  So, it is not more expensive to be gluten free.  That is a fallacy!  Soft well-cooked foods like stews are easier to digest in the beginning (even fruit).  Think about that for a few weeks.  Luckily, kids tend to heal much faster than adults!

I cook in large batches and freeze stuff.  I bake and freeze so that I always have goodies when we go to a party.  You'll soon get it.

I hope your sons feel better soon.  Teen years are extra hard (mine is 15) and to be "different" is hard. But soon feeling better will trump eating gluten-containing foods.  

 

[Midwitch]

Yes everyone else in the house is negative. After the second child was diagnosed, we all got tested.  I suspect the 10 year old may develop it though as he has the bags under the eyes that the other two developed. 

 

 All grandparents are dead.  The childrens father is estranged and although I let him know and suggested testing the reply was "obviously they got it from you"  so I doubt he will test. Thats his problem now.  

 

Thankfully we already eat pretty healthy and lots of good whole foods, although I had relied on bought pasta sauce quite a bit. Having gone shopping yesterday I made the executive decision to not bake - I work long hours and they are random so baking went out the window years ago as the kids got older.  The huge range of gluten free baked goods is fantastic and lucky neither has a particularly sweet tooth. 

 

Freezing a few meals will be my next challenge - I'll get onto that next weekend after I shuffle some things out of my freezer. 

 

Yesterday the 12 year old was so sick he spent all day sleeping. When he got up at 4pm I made him eat avocado on toast.  In the evening he was so ill I almost took him to the hospital - but I know it won't speed things up so not much point.  Its only two more sleeps, then I can start his healing. 

[kareng]

I use jar pasta sauce. you could try cooking gluten-free pasta  one pot and regular in another (separate colanders!). I tried that for  while and it drove me nuts trying to keep them separate.  Worked best if I had a teen manage the gluten pasta with his spoon and I managed and held onto the gluten-free spoon.  It gets to confusing to keep them separate. 

 

 

[Midwitch]

I think it would just be easier to cook everyone the gluten free pasta despite the increase in cost. I have found a couple of brands of jar pasta sauce that are definitely gluten free so have switched to them.  My children are half Italian so missing out on pasta would be life altering for them, lol.  

 

The biggest heart break has been throwing out so many bottles of sauces and pickles, spices/flavourings etc.  Never mind, I will cope, its just a mind set that needs changing. Instant meals for the kids to heat while I am at work is the biggie, but I am getting there with that.  At the very least I have some soups in the freezer and gluten-free noodles will fill the gap in an emergency. Today we finally found a commercially made white bread that they both (almost) like. At $8 per loaf, its been pretty expensive duck food when they didnt like it so I am very happy to have found a brand that passes their palate test. 

[squirmingitch]

Everyone who is not celiac gets tested every 2 years UNLESS symptoms present sooner & then you test right away. Remember, they will need to be eating gluten for testing. 

Wow, it sounds like you have your hands full & then some! However, you have the answer for the 12 & 17 yr. olds. YAY!!! 

Hang in there mom! {{{{{{HUGS}}}}}

[Midwitch]

On 9 April 2016 at 11:04 AM, squirmingitch said:

Everyone who is not celiac gets tested every 2 years UNLESS symptoms present sooner & then you test right away. Remember, they will need to be eating gluten for testing. 

Wow, it sounds like you have your hands full & then some! However, you have the answer for the 12 & 17 yr. olds. YAY!!! 

Hang in there mom! {{{{{{HUGS}}}}}

Thanks so much for the encouragement. I feel a little overwhelmed. I maybe went overboard on buying gluten-free foods this weekend as I am in fear they will be hungry if I am at an allnighter for work. Better too much than too little I say. Our big day for Mr12 is tomorrow, and I cant wait to get him onto safe food afterwards. 

[squirmingitch]

Get them into raw veggies as soon as their guts have healed enough to handle raw veggies. Snow peas, carrots, celery, heck I love raw green peppers. Cauliflower, broccoli, zucchini, yellow squash. Some Ranch dressing for dipping. YUM! and don't even get me started on fresh fruits! Or dried fruits. Or nuts. 

[Midwitch]

1 hour ago, squirmingitch said:

Get them into raw veggies as soon as their guts have healed enough to handle raw veggies. Snow peas, carrots, celery, heck I love raw green peppers. Cauliflower, broccoli, zucchini, yellow squash. Some Ranch dressing for dipping. YUM! and don't even get me started on fresh fruits! Or dried fruits. Or nuts. 

Absolutely. We do eat a lot of raw veggies and nuts, as well as fruit already.  I grow a fair bit too so its all organic and fresh. 

 

[Midwitch]

Well its been a very frustrating two weeks.  My son was scheduled to have his endoscopy at the (only) childrens hospital in our city on the 12th. He was nil by mouth from midnight as requested for the GA and we turned up as requested at 7am.  At midday after all the much younger children had been through and come back to recovery, I realised something was amiss.  His file had been mis-placed and they had forgotten him. He had spent 5 hours curled up like a sick cat on a hard chair with his sweatshirt hood pulled over his face - while the other children ran around screaming, laughing and playing.  At midday despite my anger and disbelief (and I can safely say I have NEVER ever  been so angry in my life), we were sent home. He was so ill and so hungry he fainted after walking up some stairs and fell to the bottom, sustaining a concussion and major bruising. 

 

I put in a formal complaint which has been acknowledged with an apology yet he was rescheduled for two weeks later. So his endo is now this Wednesday coming. He managed two days of school since then.  He cried when I told him he had to keep eating gluten. He said he just cant bear the pain and would rather starve to death.  I have deliberately fed him something that is all but killing him. I actually make pancakes which he used to love smothered with maple syrup, and buy subway because I know he cant resist it. I cook his favourite eye fillet steak and I (very oddly) dip it in breadcrumbs first. I hope this is enough gluten to make the endo worthwhile.  His weight is now down to 60lb making his BMI just under 11. 

 

I feel utterly sick and like a sadist making him eat gluten. Heres hoping the next 3 days flies by. He hasn't been out of bed except to toilet all day today. Yesterday he managed 2 hours out of bed. 

[ChiaChick]

2 hours ago, Midwitch said:

2 hours ago, Midwitch said:

 He cried when I told him he had to keep eating gluten. He said he just cant bear the pain and would rather starve to death. 

I feel utterly sick and like a sadist making him eat gluten. 

 

I deleted much of your post to avoid scrolling for others, but wanted to comment on these things in particular. My heart goes out to you both. What a terrible time. I can only imagine how completely and utterly furious you must have been at the hospital. To your son: I know it is tough. Hang in there buddy. Two more days, and then you will be on your way to much better health. The bright side (if you will...) is that having been so ill, he will remember clearly his desperation to be well, and hopefully it will encourage him to stick strictly to his new food regime with a passion for avoidance of what poisoned him. Best of luck to you both. I will be counting down with you. xx

[squirmingitch]

All I can do right now is cry. Cry for the pain your son is going through and cry for the pain you, as his mom, are going through. What a travesty!!!! I can't imagine how you kept yourself from tearing the place apart with your bare hands in anger & frustration. 

 

Monumental hugs to you & your son both. {{{{{{{{{{{{{{{{{{{{{{{{{{{{{{HUGS}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}

[kareng]

12 hours ago, Midwitch said:

Well its been a very frustrating two weeks.  My son was scheduled to have his endoscopy at the (only) childrens hospital in our city on the 12th. He was nil by mouth from midnight as requested for the GA and we turned up as requested at 7am.  At midday after all the much younger children had been through and come back to recovery, I realised something was amiss.  His file had been mis-placed and they had forgotten him. He had spent 5 hours curled up like a sick cat on a hard chair with his sweatshirt hood pulled over his face - while the other children ran around screaming, laughing and playing.  At midday despite my anger and disbelief (and I can safely say I have NEVER ever  been so angry in my life), we were sent home. He was so ill and so hungry he fainted after walking up some stairs and fell to the bottom, sustaining a concussion and major bruising. 

 

I put in a formal complaint which has been acknowledged with an apology yet he was rescheduled for two weeks later. So his endo is now this Wednesday coming. He managed two days of school since then.  He cried when I told him he had to keep eating gluten. He said he just cant bear the pain and would rather starve to death.  I have deliberately fed him something that is all but killing him. I actually make pancakes which he used to love smothered with maple syrup, and buy subway because I know he cant resist it. I cook his favourite eye fillet steak and I (very oddly) dip it in breadcrumbs first. I hope this is enough gluten to make the endo worthwhile.  His weight is now down to 60lb making his BMI just under 11. 

 

I feel utterly sick and like a sadist making him eat gluten. Heres hoping the next 3 days flies by. He hasn't been out of bed except to toilet all day today. Yesterday he managed 2 hours out of bed. 

Did he faint at the hospital or home?  Either way, you may want to consult a malpractice attorney.  I know a few thousand dollars won't make up for the issues, but it makes a nice deposit in the college fund.  My son is using his malpractice money for his first and last months rent and some moving expenses to his first job out of college.  

 

[ChiaChick]

@Midwitch,

Hello,

Just checking in to ask how your son and you are doing. I have been thinking about you both, and willing the time away before his test. I am so heartbroken for your boy. It is Monday night here in Australia, so I am guessing more like Monday morning for you. I am thinking that his procedure is Tuesday, and if correct, this is the last day he has to get through before he can go gluten free. 

He won't feel better immediately, but hopefully he will feel some difference before too long. 

For you, no more having to dish gluten up to him. That will be a huge relief to you.

Better days ahead I hope.

[Marcindy3]

I so feel your pain!!!! My 10 yr old was dx with Celiac a month ago & her vomiting still has not stopped! They say she has gastroparesis on top of this & of course lactose intolerance. She's so upset & frustrated a lot of the time & I can see the change in her already. I told her that we could go talk to a dr about celiac & just talk to them (I was gonna take her to a counselor) & she started crying unless they have celiac disease they don't know how I feel. No one knows how I feel. So heartbreaking. She went to a full day of school yesterday. The first in a month but today is home sick D/t vomiting last night & this morning. I know exactly how you feel. I pray a lot. I know God will get us through this. Does anyone know when the vomiting will stop? I think that will help if she can physically start feeling better than hopefully emotionally/mentally she will. 

[cyclinglady]

23 minutes ago, Marcindy3 said:

I so feel your pain!!!! My 10 yr old was dx with Celiac a month ago & her vomiting still has not stopped! They say she has gastroparesis on top of this & of course lactose intolerance. She's so upset & frustrated a lot of the time & I can see the change in her already. I told her that we could go talk to a dr about celiac & just talk to them (I was gonna take her to a counselor) & she started crying unless they have celiac disease they don't know how I feel. No one knows how I feel. So heartbreaking. She went to a full day of school yesterday. The first in a month but today is home sick D/t vomiting last night & this morning. I know exactly how you feel. I pray a lot. I know God will get us through this. Does anyone know when the vomiting will stop? I think that will help if she can physically start feeling better than hopefully emotionally/mentally she will. 

Think about when you have the flu.  Your parents probably gave you the BRAT diet.  In this case, skip the toast for now as it is very processed.   Feed her small meals starting with homemade soups to start.  Cook her fruit (e.g. baked apple, banana or applesauce).  Soon, she will feel better!  Make sure she is hydrated with water and an electrolyte drink.  Hang in there, Mom!  

[Midwitch]

On 23 April 2016 at 7:04 AM, kareng said:

Did he faint at the hospital or home?  Either way, you may want to consult a malpractice attorney.  I know a few thousand dollars won't make up for the issues, but it makes a nice deposit in the college fund.  My son is using his malpractice money for his first and last months rent and some moving expenses to his first job out of college.  

 

He fainted in the hospital stairs. But we don't have that system here.  We cant sue. However he had his endo yesterday and I had several top people come and apologize to us, and we will get a formal written apology.  As he lay curled up on a chair again, waiting, the charge nurse insisted he get rushed through. They noted he had lost more weight in two weeks. The doctor doing the procedure was the original one and he came by afterwards and told me that even without the path results he is 100% certain it is coeliacs as his vili were so damaged under microscope that he wondered why the boy isn't more anaemic than he already is. He is scheduled for iron transfusion next week but he isn't very impressed. I think he is afraid of needles but too proud to admit it. He also has follow up with dietician and gastro at the same time. 

 

And today he is finally gluten free. I have deformed the healthy bone broth I have been making and freezing for him. I cant wait to see him looking better. 

 

Thanks everyone, I feel so much better reading on this board.  Its been a sickening rollercoaster ride watching him get sicker and sicker.  I appreciate all your kindness. 

 

Just wanted to add: the doctor apologized genuine.y. He said: you were really angry and you told me how sick he was but I didnt get it. Now I do.  He really is a sick little boy. 

[squirmingitch]

Well thank goodness the gluten eating is over for him now & he can begin the journey back to good health! Poor fella. He was so sick! Just a heads up --- he isn't going to feel better instantly but at least he's a kid & they heal faster as a general rule.

Bone broth!!!! Yaaaaaaaaaaaaaaaayyyyyyyyyyyyyyyyy mom! That's really going to help him!

 

Do I recall correctly that you still have the 17 yr. old to go through testing yet?

[ChiaChick]

Wonderful news to hear that he has finally had his testing done, and can go gluten free. I understand that he is afraid of needles. Most children are.

It is great that the hospital have acknowledged his and your family's suffering. Hopefully now they will give him the A1 treatment that he deserves.

I am really looking forward to hearing of his improvement, as no doubt he will come along in leaps and bounds. Children are remarkably resilient, and with any luck he will enjoy a healthy and bright future with adherence to his required diet.

Way to go Mum, you have been through a lot, watching your boy suffer. I hope that you are handsomely rewarded with being able to watch him flourish now.

Good luck with your older boy too. Keep us posted.

[Celiac Nutritionist]

How scary to watch your child go through what you have seen. 

I wish you huge luck with both biopsies.     

In urge before you and your daughter go gluten free - celiac can also be "silent" - and it is very common and normal to run in direct relatives- I would HIGHLY RECOMMEND you and your other children (even your spouse) seeking appropriate testing BEFORE going on a gluten free diet in support!  

I was 17 when I was diagnosed - and although your son is feeling the way he is, and it will be an adjustment period, he will figure out how to eat with and do normal things with his friends. 

Let us know how the biopsies go! 

 

 

[Midwitch]

Thanks everyone. Marios endo is next Friday.  I havent had my blood test yet and my 10 year old is having his tomorrow (this is costing me - he is very emotionally sensitive and he is freaking out. New headphones are my bribe).  Daughter and other children are all negative.  

 

This weekend has been a struggle. Gluten free foods are fine, I have always cooked healthy meals from scratch, but school lunches are a nightmare (they were on holiday till today). He has a lunchbox filled with safe goodies but I just know his friends will tempt him - they all eat a meat pie (pastry) and sweets every day. He will find it hard not to join in.  

 

And the preparing non gluten free foods alongside gluten free is a total nightmare. Despite cutting boards being clearly labelled AND in a different place, the non gluten board was used for sandwich making by the non coeliacs. I now store his breadboard and toaster plus other implements ON MY DESK in the lounge - our house is tiny with virtually no storage and this is the only way I can be sure no one uses his stuff.  Then I watched in horror as a child wiped his hands on a towel in the kitchen after eating a sandwich and along came V who did the same.  Honestly I think it would just be much easier if we all went gluten free in the house and the others can buy and eat normal food when out of the house. Cross contamination is going to drive me nuts. 

 

He is enjoying his bone broth though, and I am making him a smoothie each day with protein powder and green vitamins (both gluten free). He is now on slippery elm which may be helping his reflux and I just found some good probiotics that say gluten free. 

[Midwitch]

Today is day 5 and I know it takes much longer to recover, but he is so ill today he has skipped school and is in bed asleep when he is not writing around in pain.   I will interrogate him later - there is a chance he ate something from his friends.  

[tessa25]

Are there any foods, like broth, that don't make your son feel sick?

[Midwitch]

3 hours ago, tessa25 said:

Are there any foods, like broth, that don't make your son feel sick?

Yes, the broth helps. He wolfed some down and felt okay.  He insists he didnt eat anything from his friends. He did however gobble several gherkins last night - I checked they were gluten free but I am wondering now.  Dammit. He loves gherkins.