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- SaiP replied to SaiP's topic in Coping with Celiac Disease2Dangerously underweight, Perfect gluten free and insomnia
Hi Trents Many thanks for the response. My average intake ranges from 3000 - 4000 calories per day. In regards to carbohydrates, the majority of my calories are coming from white rice. I eat around 2000+ calories of white rice per day, so definitely not low in carbohydrates. I was thinking of adding sweet potatoes to the diet. Yes, fats... -
- trents replied to SaiP's topic in Coping with Celiac Disease2Dangerously underweight, Perfect gluten free and insomnia
Welcome to the forum, @SaiP! Have you been officially diagnosed with celiac disease or are you self-diagnosed? What is your average calorie intake per day? Your diet seems to be low in carbohydrates. The only carbohydrate rich food in your list is the white rice. A snack high in simple carbohydrates before retiring for bed at night may help with... -
- cristiana replied to sillyyak52's topic in Coping with Celiac Disease1Family education
@sillyyak52 Welcome to the forum! I'm just about to go away for a couple of days but read this and just had to reply. I am so sorry for what you are going through... it is really tough. Perhaps finding a short video online which explains the seriousness of celiac disease might help. Just sit your family down and say, "Please just watch this... -
- sillyyak52 posted a topic in Coping with Celiac Disease1Family education
I was diagnosed with celiac disease just over a year ago. I never had any gastrointestinal symptoms before I started eating gluten free, and the diagnosis did come somewhat as a shock. The symptoms that led to my diagnosis were fatigue, and an ongoing Iron and Vitamin D deficiency that worsened even when taking supplements. I visited my GP with these symptoms... -
- SaiP posted a topic in Coping with Celiac Disease2
Dangerously underweight, Perfect gluten free and insomnia
Hi guys, I have been reading this forum for quite a while now, so I decided to create an account and post my story. I've had celiac disease since September 2015 and yet over the years i have still eaten gluten and gradually went from 65kg to 43kg in a 9 year period. I am severely underweight and and decided to go gluten free. Age - 34, Male...
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Hi Trents Many thanks for the response. My average intake ranges from 3000 - 4000 calories per day. In regards to carbohydrates, the majority of my calories are coming from white rice. I eat around 2000+ calories of white rice per day, so definitely not low in carbohydrates. I was thinking of adding sweet potatoes to the diet. Yes, fats are low, looking into it. I've seen people complain about the same issue in 3-4 threads, but there hasn't been any solution. I was thinking of eating the same diet as stated above and each day, eat small pieces of toast to see, by how many hours my sleep improves. What makes you think gluten widrawal would subside? Is this insomnia happening because maybe I've been a asymptomatic then symptomatic celiac all my life and the body is "shocked"? There seem to be almost no information on gluten widrawal and insomnia anywhere. -
Welcome to the forum, @SaiP! Have you been officially diagnosed with celiac disease or are you self-diagnosed? What is your average calorie intake per day? Your diet seems to be low in carbohydrates. The only carbohydrate rich food in your list is the white rice. A snack high in simple carbohydrates before retiring for bed at night may help with sleep. Can you do potatoes? Also, tryptophan is reported to help with sleep. Turkey meat is a rich source of tryptophan. Also, your diet would seem to be low in fats and oils. Apart from the avocado, there is not much in your diet to supply this vital category of nutrient. Your theory about the connection between gluten withdrawal and insomnia seems reasonable. Especially since you have experimented with it. Gluten withdrawal should subside in a few weeks I would think.
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@sillyyak52 Welcome to the forum! I'm just about to go away for a couple of days but read this and just had to reply. I am so sorry for what you are going through... it is really tough. Perhaps finding a short video online which explains the seriousness of celiac disease might help. Just sit your family down and say, "Please just watch this one video with me." There is one, here for example, on Coeliac UK, which I think is convincing - What is Coeliac Disease? https://www.coeliac.org.uk/healthcare-professionals/resources/videos-for-newly-diagnosed-patients/?&&type=r&set=true#cookie-widget I was watching a TV comedy programme we have in the UK over Christmas called Doc Martin. If you get this programme where you live, there is a case on the final ever episode (Christmas 2022). The seriousness of celiac disease is explained in that episode,. Perhaps watching something rather than reading would help? But if you are after something short to read, I am not sure what country you live in but you might be able to find a coeliac charity that produces pamphlets, or perhaps your GP could let you have something? Perhaps even better, would you be able to attend the GP surgery with your mother and get your GP to explain the seriousness of not complying with the diet? Cristiana
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By sillyyak52 · Posted
I was diagnosed with celiac disease just over a year ago. I never had any gastrointestinal symptoms before I started eating gluten free, and the diagnosis did come somewhat as a shock. The symptoms that led to my diagnosis were fatigue, and an ongoing Iron and Vitamin D deficiency that worsened even when taking supplements. I visited my GP with these symptoms, which consequently led to a positive celiac blood test and eventually a positive biopsy. Since starting the gluten free diet, I no longer have any deficiencies or unexplained fatigue. When I am glutened now, I experience bloating, severe constipation (that often affects my sleep!) and an onset of fatigue. My family does not believe that I actually have celiac disease, and thinks that all these symptoms are a 'placebo' effect of being told the 'wrong' diagnosis. Ever since my diagnosis, they have constantly been telling me that I should seek a second opinion. I really don't see the point of getting a second opinion. I trust that the blood test and biopsy were accurate, and the improvement in my blood tests, fatigue and the symptoms I experience now when I now accidentally consume gluten are enough for me. On top of that, if I were to seek a second opinion now, I believe I would need to do a gluten challenge to get an accurate diagnosis, which I am definitely not willing to do just to please my family. Because they don't believe in my diagnosis, they think that I take the diet 'too seriously'. They are always comparing my celiac disease to my siblings' mild peanut allergy, and it is so exhausting trying to explain it when they just look at me like I am crazy. For example, since my siblings can eat products with 'may contain peanuts' with no issues, they tell me I am ridiculous for avoiding 'may contain gluten' products when possible. I am also very careful about cross-contact in restaurants, which they will make similar comments about. I have been told are that "I need to stop being so fussy because I live in the real world". Recently, when I did not want to buy my birthday cake from a local bakery that confirmed their gluten free items are not coeliac-safe, my family told me "Well, who cares? They said it's gluten free. What more could you want? Do you need to take them to court to prove it's gluten free so you'll eat it?" It is truly so upsetting that after a year they have made no effort to understand celiac disease, and why I am so strict or 'fussy'. I have thought about giving them information to read, but my mom never ever reads anything. Not even her own emails, and will often make me read things and summarise them for her. She is honestly the one who is most difficult and very obviously still sees my celiac disease as something that I choose to believe. How do you deal with people close to you who just refuse to understand? Are there any resources anyone could recommend for families that are short and easy to read? -
Hi guys, I have been reading this forum for quite a while now, so I decided to create an account and post my story. I've had celiac disease since September 2015 and yet over the years i have still eaten gluten and gradually went from 65kg to 43kg in a 9 year period. I am severely underweight and and decided to go gluten free. Age - 34, Male Weight - 94lb - 43 kg (look like a skeleton, ribs showing etc) Height - 170cm Main symptoms - Severe weight loss + severe brain fog Allergies - (all life threatening) - eggs, nuts, peas, lentils, sweetcorn and many antibiotics. I am on a 100% strict gluten free diet (all made at home) i.e. I only eat: cooked chicken thighs (with salt+pepper) White rice Bananas, apples, avacados Brocolli, spinach, beetroot Tuna Water After trying this diet for a week I suddenly developed severe insomnia and can barely get 1-2 hours of sleep, however when I start eating gluten again, my sleep is perfect. I have seen other threads on this forum from people experiencing the same thing, and other people recommending e.g. B12, magnesium etc. However, I highly doubt this insomnia is caused by a lack of vitamins+minerals. I am thinking this insomnia is caused by some kind of gluten widrawal. I am now eating small amounts of gluten daily to see whether the insomnia will improve and gradually reduce the amount of gluten, so my body gets used to the sudden change and the insomnia will stop I am fairly confident this approach will work, but unsure. The main issue is, I am dangerously underweight now, but sleep is much more important, so I am in a conflicted situation. Your thoughts? Thanks!
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