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About HannahBick

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  1. HannahBick

    Can celiac disease go away? Struggling

    For some people, celiac disease can become latent but this only happens in a minority of cases. You're lucky to have a doctor who is aware of the serious issues surrounding this disease. My husband was diagnosed over 40 years ago as a very sick child and both he and our PCP did not think our kids needed to be screened for the disease, since they never had the extreme symptoms or *obvious* classic celiac manifestations. It would save us money and the kids wouldn't have to say no to pasta, pizza and cake. I recently charged ahead, got them tested and diagnosed while hubby was away. Perhaps you could get a gene test to see if you have the HLA-DQ2 (DQA1*05 and/or DQB1*02) or HLA-DQ8 (DQB1*0302) genes. If you don't have those, then celiac disease is very unlikely. Many doctors are very backward when it comes to celiac disease. When I explained this to my kids they became more motivated to stick to the diet, as they don't want to feel ill and be subjected to harmful, ineffective ℞ drugs because their health care provider overlooked the very real possibility of gluten contamination in the diet.
  2. There may be a quicker and easier way to diagnose celiac disease in the future. I just finished watching a video from the Celiac Disease Foundation of Dr. Bob Anderson speaking about a potential diagnostic test that may not require the 6-12 week gluten challenge.
  3. One of my daughters decided to eat a piece of regular birthday cake early last week at a friend's house. She never let them know about her new diet and figured this was a one-off event and the worst that could happen is the mild symptoms she'd become used to having would return for a short time. Three hours later she experienced severe food poisoning symptoms that I took her to the hospital for she still hasn't fully recovered from to date. My daughter *didn't know why* she was sick. I only found out later she was glutened because her friend's mother mentioned the cake. My husband, who I thought was coming to grips with our new lifestyle, said that by pulling gluten out of her diet, her body has learned to reject it. One of our previous MDs said the same thing several years ago. I have heard that people can become more symptomatic when exposed after avoiding gluten for a long time, but looking I really think it was a problem for my kids all along.
  4. A 6-week gluten challenge is often enough for people to show changes on biopsy. As long as you are willing to follow the gluten free diet for the rest of your life (from this day forward, for better, for worse), and you don't mismanage the situation by eating gluten-containing food once in a while, I think you have made the right decision. Further to what @cyclinglady said, it might be worthwhile getting tested for celiac antibodies (tTG (IgA), EMA (IgA), DGP (IgA and IgG) and Total IgA Level) because as soon after going gluten free, the disease quickly becomes undiagnosable.
  5. Didn't see this before ^ Is it possible to get tested/diagnosed and not have the results placed on your record? Is there a way to pay a bit extra for privacy in this regard? I think getting diagnosed is worthwhile, but didn't give the issue you mentioned above much thought.
  6. For where you're at in the challenge, I think it is worth it. If you have that piece of paper your friends and family members are more likely to take your condition seriously. Also, first degree relatives of a celiac patient are also at an increased risk for developing celiac disease, even if asymptomatic and they are more likely to be willing to get tested themselves if you actually have a confirmed diagnosis. As far as I know, you need to eat four to six slices of bread per day, every day, for at least 6-8 weeks. Then go in for a blood test (celiac panel) and duodenal biopsy.
  7. My husband would argue that you are lucky to have been diagnosed later in life! Did you have absolutely no symptoms prior to that? A lot of people I’ve talked to in the celiac support group say they had mild, inapparent symptoms throughout their lives but at some point their health took a dive and problems became very apparent. I suspect my husband is homozygous for the HLA-DQ2.5 gene because all of the kids are heterozygous for it and I have none of the celiac genes. He wasn’t happy that I did what I did, but more recently we had some counseling over a few other issues and a LOT about his past was revealed during the sessions. Needless to say, I have cleaned the house and we are all gluten free. My husband and kids are slowly coming to terms with our new lifestyle. They’ll get there.
  8. 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 😂).
  9. 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. 🙁
  10. 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.
  11. 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.
  12. 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.
  13. 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.
  14. 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...
  15. 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!