HannahBick

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About HannahBick

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  1. You nailed it CDInSanDiego! I'll quote you the next time my kids complain. My husband was diagnosed with celiac in the late 1960s as a very sick young child. It was considered a rare childhood illness and he was crippled by eating gluten. He still feels very sorry for himself that he has been one of the very few who has had to be gluten free since that time when options were extremely limited and the "woe-is-me" mindset still lingers. So much so that he (along with our PCP) repeatedly refused to test our 10 children for it (since they didn't have the same extreme symptoms) so they could at least enjoy the gluten items he never could and avoid the social isolation that comes with the diagnosis. I started to research more on the Internet about celiac disease. Earlier this year, I decided to take charge when he was away and got them tested. 8 out of our 10 were diagnosed and so the household is now totally gluten-free. Needless to say, my husband often talked about how he felt sorry for himself (in front of the kids) being celiac yet insisted that the rest of us use regular (wheat) flour in the house to save money and so that the kids could enjoy regular gluten-filled treats and therefore he wouldn't 'burden' us with his health condition. He hates the term 'celiac disease' and much prefers to it to be referred to as 'celiac'. His attitude about all of this has definitely had a detrimental effect on not only our children's health but also their perception of life with the disease (which they are slowly overcoming, almost entirely thanks to my efforts 😂).
  2. Thank you for all the recipes! All of my sons and daughters (including the non-celiac ones) have been gluten free for the past few weeks and I can't believe the difference it has made in their health. It's a miracle! For the first time, my youngest (learning disabled) is actually communicating in sentences. They are sleeping through the night and sugar is no longer making them 'naughty'. I am very sorry I did not get onto this earlier. My husband said we need to make sure the kids don't eat much sugar because it will make them behave wildly and feed the germs. Unfortunately, one of my sons (who recently went gluten-free) was officially diagnosed with type 1 diabetes yesterday. We have been baking a lot of gluten free sweets in the past week due to having friends coming over and my son was getting up several times during the night to the restroom after we indulged ourselves. He had mild unexplained GI symptoms and poor weight gain all his life up until 2 weeks ago and my husband thinks my changing his diet so drastically and suddenly has shocked his system and caused him to become a diabetic. I don't believe a word of it, since he is healthier in every other way. Our endocrinologist thinks the untreated celiac disease had more to do with it since she said you won't become type 1 diabetic overnight. She also mentioned that she has only seen three people develop type 1 diabetes after being diagnosed with celiac and that it's usually the other way around. I am really upset for my son. He was the one who asked a few years ago if he might be celiac as well and we just dismissed it, hubby said he'd be crippled and unable to function if he really had it. So we'll be going in tomorrow and learning how to use insulin. 🙁
  3. Many people can have some of the signs and symptoms of celiac disease, but not have celiac disease at the time of testing and then if you wait long enough they get celiac disease later on.
  4. My good friend with celiac disease was there with me when he got home. He brought some regular non-gluten-free biscuits for the kids and even offered them to said friend before he remembered that she too can't have them. Go figure. I told my husband about the kids in front of her so I could have her support. He appeared calm at the time and for the rest of the evening but upon waking the next morning he had left, with no explanation or anything other than to leave a note on the table saying, "I think you know why I might not be at home this morning." He hasn't blown up but also hasn't said much. He's been rather cold since he has returned home. I spoke to a counselor about my husband before having the kids tested. From what I told her about all of this, she believed the only explanation was that he thrives on receiving pity. When one of the kids recently mentioned that they felt sorry for my father (after he threatened suicide a few months ago) never being able to eat gluten, that was the final straw for me since it meant that she had no idea about the implications for her and her siblings. One question. Have you found gluten free food to really be a lot more expensive or do you think is an excuse? I have been grocery shopping and have found that most naturally gluten free foods like potatoes, rice, beans, fruits and vegetables are priced very competitively. I haven't bought gluten free bread for them - the GI doc advised us to stay away from it for a while due to the texture difference - but got a few gluten-free cake and cookie mixes for the kids to bake together during the summer break. I'll also look at some of the recipes on here.
  5. I will find out when he gets home tonight. The gastroenterologist wrote a letter for each of them to certify that they have celiac disease and require a strict, lifelong gluten free diet so at least if my husband isn't happy he can go and argue with the GI specialist.
  6. Thank you all for your help and support over these past few weeks. The kids have had their EGD and the results are in. Only two of the 10 had a normal biopsy. They all have the DQ2 gene and I don't carry any of the celiac genes so it had to come from their father. The entire household (including myself, at least for a while) will be going gluten free.
  7. I've been told that a lot of PCPs have this attitude about celiac. Ours hasn't even evaluated my husband's diet. We don't live near a university medical center so that doesn't help. At the moment I am using up the non-gluten-free items while I wait for all the kids to get scoped and treating them to Dunkin Donuts, Oreo cookies and Pizza. They are aware that their lifestyle will soon change (yes there have been tears, my daughters are very worried about their upcoming biopsies this week) so I've told them to enjoy the unrestricted diet while it lasts. They will now experience first-hand what it is like to not be able to eat the foods at social events and spontaneously go to other kids' homes for sleepovers. I have spent years trying to stick up for my husband and make him look good to other people. He will arrive home late next week, so hopefully all of the results from their EGD and biopsy will be in by then and I can show him proof from the GI specialist. I've decided that if the kids complain about the gluten-free diet being difficult, I'll remind them of how their father has had to follow the diet from an even younger age, and also point out the risks of having untreated celiac. Maybe that Oreo cookie won't look so appetising after all...
  8. I have taken my children to a different doctor, who was recommended by a celiac friend of mine. 7 out of the 10 children have tested positive, and all of them are scheduled for an EGD at different times (since they all have signs/symptoms). I'm not surprised since they (and I) have all eaten a lot of unhealthy high-gluten food for so long, far more than most people, given that wonder bread is so inexpensive. My husband has been away for the last two weeks so he doesn't know what I've done. At least if they have a positive biopsy he and our PCP can't argue anymore!
  9. Should we even refer to the HLA-DQ2 and HLA-DQ8 genes as 'celiac genes'? A lot of people seem to think that everyone who is HLA-DQ2/8 positive is potentially a case of celiac disease waiting to be triggered but I just don't think that's the case. Surely there must be other genes involved as well. I heard there are 30+ additional genes.
  10. Do realise that she may have developed celiac disease anyway, even had she not encountered the 'food poisoning' incident. I heard from an MD friend of mine that a recent study showed that infections did not seem to influence celiac risk.
  11. My husband (who is celiac) doesn't want our children tested even though some are showing symptoms. 4-6 months is a very short time interval to develop full blown Type l diabetes from the initial onset of autoimmunity. I would have thought 4-6 years would have been a more likely timeframe. Was your daughter completely gluten free before December last year?
  12. I would be very surprised if someone with celiac disease could eat gluten after a series of these shots.
  13. I think the prevalence much higher too. It seems like a lot of our friends are celiac and at least a few families we know have more than one affected member. My husband is celiac (diagnosed several decades ago) and I am pretty sure some of our kids are as well, even though the spouse doesn't want to admit it or have them screened because of our tight budget and the cost of gluten free food. But if celiacs seem to be everywhere, why do celiac organizations say that 1% are affected and 80% of them are undiagnosed?
  14. I think there are going to be some tears, at least for a few of them. Most of them adore bread even though I don't believe it necessarily adores them back. One of the children had a bowel movement earlier today, forgot to flush the loo and it absolutely stank. I think my husband has wanted to live his life through his children since he missed out on being able to eat normal breads, cakes and biscuits. Gluten hasn't even come close to destroying our childrens' health like it destroyed his own when he was very young. He always considers the children to be his friends. I am a bit shocked to be honest as I believed him when he told me that celiac is normally inherited from the mother (caused by c-section, quality of breastmilk as well as genes, etc.) and not the father and that because he was gluten free at the time of conception he thought they were even less likely to have problems. I just don't want any doctors short changing or (intentionally/unintentionally) fooling me in the process. I need to know what I am getting into and be very sure of myself.
  15. What parent, in their right mind, would do that?