cristiana

Hi Marie
Welcome to the forum.
I am so sorry your daughter is pointing the finger at you like this.   I am afraid children of any age can be very cruel to their parents - I certainly look back at some of the things I said to my mother and father in the past, and wish I could unsay them.  Sometimes people just need a safe place to vent, and unfortunately having a go at one's parents is the all too easy option.  If she is anything like me, she will regret what she says one day.  (Oh... if only I had the chance rewind the clock!)
I just wanted to add one more thing to Trent's and Scott's excellent posts and that is regarding diet:  I have to say, not one person  (my nutritionist, my gastroenterologist or GP) has EVER suggested that a poor diet was the cause of my coeliac disease.   
In all the various clinics I have attended these past nearly 12 years no-one has ever asked if I was brought up on processed food, or questioned if I eat 5 fruit and veg a day. 
Sure, unfortunately I am only too well aware that I could do a lot better with my diet and it's a constant challenge for me not to give into what I like (unfortunately I've always had a sweet tooth).   But I know some super healthy 10 fruit and veg a day types who still got coeliac disease, and equally, a lot of people who eat all the wrong stuff and they still have cast iron stomachs.
Do encourage her to get checked though - it may be that she hasn't got coeliac disease at all.
Come back to us if you need any more support through the process.
Cristiana

Welcome to the forum, @Marie70!
The first thing to know is that celiac disease has a genetic base. The two main genes that have been identified as providing the potential to develop celiac disease are HLA-DQ2 and HLA-DQ8. About 40% of  the general population carries one or both of these genes. However, only about 1% of the general population ever develops celiac disease. So, we know that in addition to possessing the genetic potential to develop celiac disease, there has to be some triggering environmental or medical "stress" factor (or factors) that switches the gene or genes on such that they are awakened from their latent condition and become active. What may be the triggering factor (or factors) is the subject of much debate. Here is an article that discusses this subject:
Second, what will your daughter have to say if her testing for celiac disease is negative? She may have to add crow to her diet.
Third, and this is what I really want to focus on because my wife and I are dealing with something similar in our relationship with our own adult daughter: the real problem is not whatever shortcomings you, as the family cook, may have had when providing meals, the real problem is with your daughter's heart/soul/attitude. If it turns out to be true that she has celiac disease, it is likely she would have developed the condition sooner or later even if her diet had been healthier while growing up. She is angry about the prospect of having to deal with the dietary and social limitations that having celiac disease would impose upon her. She doesn't want to face up to the fact that this may be a new reality that will dramatically changer her life and she is looking for someone or something to blame. And she has conveniently turned her wrath on you rather than saying to herself, "Okay, this is what it is. Now what can I do to make adjustments in order to with it the best way I can?" 
When faced with a life-changing reality, people will either accept it for what it is, make adjustments and move on or they will become angry and look for something or someone to blame and get stuck. For now, at least, your daughter has chosen the latter option. Don't let her problem destroy both of you.

It sounds like you’re carrying a lot of guilt, but please know that you didn’t cause your daughter’s potential celiac disease or your son’s Crohn’s. These conditions have strong genetic components, and while diet can influence symptoms, it does not cause autoimmune diseases. You did the best you could with the knowledge you had at the time, and no parent is perfect. Your daughter’s frustration is understandable, but it’s likely coming from a place of fear and uncertainty rather than true blame. Let her get tested, and if she does have celiac disease, you can support her moving forward. Instead of focusing on guilt, try shifting the conversation toward healing and learning together. You’re not alone, and you don’t deserve to carry this weight on your own.
This article might be helpful. She needs to be screened for celiac disease before she can be sure that she has it. Another approach not discussed in the article is a genetic test for celiac disease, which she could do without eating gluten.
 
 
 

Karen, welcome to the forum.
Another thing to add:  Belly bloat can persist if you are lactose intolerant, a situation caused by coeliac disease or it can simply be a stand alone condition.  In the case of coeliac disease, it could be your damaged gut cannot break down lactose efficiently but, in time, once the gut heals, your lactose intolerance and bloating should improve. 
You might also find it helpful to stay clear of certain high fibre foods for a while, perhaps keeping a food diary to see if any are causing you to bloat a lot or give you stomach pain.  Lentils and soya were an issue for me in the short term, while I was recovering.  Also, are you taking iron - that can really hurt your belly and in my case it added to the bloating.
The other point I wanted to make is has your doctor looked into any other reasons for your belly bloat.? There are a number of other gastric conditions that can result in a bloated belly.  A blood test and an ultrasound to check for possible gynaecological issues could also be something to speak to your GP about. It took me a few months for my bloating to subside, but the journey which involved a few tests along the way to ensure nothing else was was worth it.  
Cristiana

Hello @Beck1430 and welcome to the Forum.
I am sorry your little boy is going through this.
Your question is an interesting one.  I would say the majority of posts I have read since joining this forum speak of a fairly quick reaction, and that has been my own experience.  The only major gluten hit I've had in more recent times resulted in chills, dizziness and vomiting about 2-3 hours after eating gluten.  It was truly horrible. 
The fact that I vomited was new for me - I didn't get diarrhea which had been my classic reaction in the past.  It was as if in going totally gluten free my body has decided to react more violently to gluten, and quite differently.  Reactions can change over time - the fact that your son is reacting differently doesn't necessarily mean that gluten isn't the culprit.
Anyway,  this study is interesting in that it states that it is possible to react 12 hours later.
https://www.schaer.com/en-us/a/how-long-after-eating-gluten-do-symptoms-start#:~:text=A survey published in Alimentary,by 12 hours or more.
I am afraid the only way you will probably know for sure is to repeat the challenge again, but I can completely understand your reluctance to do that. 
I wonder if I can ask a couple of questions:
Regarding the rash - has that also subsided since giving up gluten?   There are quite a lot of photos of dermatitis herpetiformis to see online, I wonder if you think what your son had/has was similar? Also, do you have coeliac disease in the family?  It is inherited and if you have others in the family, that could point more strongly to your son having coeliac disease.
Cristiana

From the article regarding the tTG-IgA test:
So the most likely explanation of your positive tTG-IgA test would be celiac disease. 

Thank you so much for the detailed reply! I was just eating my normal diet so wasn't going out of my way to eat gluten. The week before my blood test I actually had a stomach virus so I wasn't eating much of anything so I do wonder if that contributed at all. Before the biopsy I was just eating my normal amount of gluten, I would say two slices of bread per day would likely be about what I was having maybe a tad more. It was mostly white bread and some pasta though. 
I can't figure out if I can edit my post but my total iga level was normal 

There is no such thing a "mild celiac disease," and your blood test results and biopsy results indicate that you indeed likely have an issues with gluten. 
It also would make no sense for you to go gluten-free for two months and get the blood test done again--I can predict the results for you--negative. The real question here is how much gluten were you eating before your last blood test? You should have been told to eat 2-6 slices of wheat bread a day for 6-8 weeks before the test, otherwise your results will likely be lower than if you had followed the proper testing protocol. The same is true for the biopsy--how much gluten were you eating daily in the 2 weeks before that test? 
This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.
 
 

Matthew 18:21-35

I must admit I've been on both sides.  Before my diagnosis, and in my ignorance, I thought all the special diets we see around us today were unnecessary and people were making a big fuss over nothing.  There is a shop in the small town where I live that sells organic and gluten free food and I used to see people walking in and buying things and thought they were being a bit ridiculous spending extra money on what I thought was a fad.  Yet since my diagnosis that shop has been a real lifesaver. 
I guess It is hard for people to see the necessity of all this extra effort if they haven't experienced celiac disease personally, or observed the way gluten affects someone they love.  Honestly, I have wondered at times if I would have been as understanding had my husband been diagnosed with coeliac disease instead of me. He has been great.  
It must be incredibly difficult if your close friends and family aren't supporting you.  I have read some awful stories from coeliacs where friends and families have not just been unsupportive, but go out of their way to continue serving up gluten.   In such extreme cases, where harm is actually being done, serious thought needs to be taken about removing oneself from harm's way. 
That all said, I find that the world is now so full of people struggling with autoimmune illnesses now, allergies and intolerances, that people are definitely becoming more attuned to things.   
Word is getting out there. In 2022 a long-running popular TV series in the UK, Doc Martin, ended with a final case: a patient being diagnosed with coeliac disease.  I don't know if anyone saw it but I was so heartened by that episode, that celiac disease was given centre stage for the last ever programme.
The patient in question had been suffering from a horrible rash which turned out to be dermatitis herpetiformis. He also had anemia, felt faint and was plain exhausted.  It would have been good education to anyone watching who didn't know about the disease and they would have been left in no doubt about its seriousness and the need to follow a strict gluten-free diet.  I thought to myself as it ended, well, now, that's another piece in our campaign to make coeliac disease better understood!
 
 

Although I disagree with interjecting the element of dermatitis herpetiformis since this is not a real issue for the OP, I think Rogo72 gives good advice about how to navigate social situations as a celiac when finding yourself in unsympathetic company. It requires developing somewhat of a tuff skin and holding your ground in order to be safe. The psychology of these situations is that family and friends try to make you as the celiac feel that you have a mental problem rather than a medical one. The fact is, they are the ones with the mental problem (ignorance and arrogance). It helps to avoid the brow beatdown to reframe it in that sense. But at the same time you must avoid the temptation to develop bitterness toward them which will destroy relationships. Rise above that and keep this one issue in its place so that it doesn't commandeer the whole of the relationships involved. As I mentioned above, I'm sure we can all remember times when we misjudged others because we were ignorant of the facts. One thing that sometimes happens in the celiac social experience is when some of those who were skeptical and critical of a celiac friend or family member find out they themselves have celiac disease. Boy, how that can change their attitude! And keep in mind, some studies have shown that almost 50% of the first degree relatives of those with celiac disease will themselves develop celiac disease. So, @sillyyak52, you may have the last laugh!

@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

@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

@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

I must admit I've been on both sides.  Before my diagnosis, and in my ignorance, I thought all the special diets we see around us today were unnecessary and people were making a big fuss over nothing.  There is a shop in the small town where I live that sells organic and gluten free food and I used to see people walking in and buying things and thought they were being a bit ridiculous spending extra money on what I thought was a fad.  Yet since my diagnosis that shop has been a real lifesaver. 
I guess It is hard for people to see the necessity of all this extra effort if they haven't experienced celiac disease personally, or observed the way gluten affects someone they love.  Honestly, I have wondered at times if I would have been as understanding had my husband been diagnosed with coeliac disease instead of me. He has been great.  
It must be incredibly difficult if your close friends and family aren't supporting you.  I have read some awful stories from coeliacs where friends and families have not just been unsupportive, but go out of their way to continue serving up gluten.   In such extreme cases, where harm is actually being done, serious thought needs to be taken about removing oneself from harm's way. 
That all said, I find that the world is now so full of people struggling with autoimmune illnesses now, allergies and intolerances, that people are definitely becoming more attuned to things.   
Word is getting out there. In 2022 a long-running popular TV series in the UK, Doc Martin, ended with a final case: a patient being diagnosed with coeliac disease.  I don't know if anyone saw it but I was so heartened by that episode, that celiac disease was given centre stage for the last ever programme.
The patient in question had been suffering from a horrible rash which turned out to be dermatitis herpetiformis. He also had anemia, felt faint and was plain exhausted.  It would have been good education to anyone watching who didn't know about the disease and they would have been left in no doubt about its seriousness and the need to follow a strict gluten-free diet.  I thought to myself as it ended, well, now, that's another piece in our campaign to make coeliac disease better understood!
 
 

How are you doing, @sadiec123?  Did you get through the holidays alright?   
Have you been checked for nutritional deficiencies?  Many newly diagnosed Celiacs  are low in Vitamin D and many of the B vitamins like thiamine.  Thiamin insufficiency can cause weight loss and loss of appetite (anorexia) as well as affect mood.   Benfotiamine has been shown to promote intestinal healing and improve mood.

I also have experienced this from time to time.  It seems to tie in with episodes of IBS, eating too much fibre but also because I have issues with my pudendal nerve - perhaps some sort of inflammation.  Not fun at all when it strikes.

Hi @DayaInTheSun
Welcome to the forum!
I've been a Mod on this forum for some years now and your feelings are shared by many of us.   
I am not sure how long you have been diagnosed, but in my own case I do find that time has helped.  It was pretty exhausting at first trying to explain to friends but they now have a pretty good grasp of coeliac disease and what it entails, either because they've hung around me long enough or have got to know other coeliacs who have educated them.  Also, two of my close friends are coeliacs and another has become allergic to yeast and with that has developed a shed load of other intolerances, so we either cook for each other or tend to socialise over coffee or just a visit to the pub, or meet for a picnic.
I now have found a few trusted restaurants and pubs where I can relax and enjoy a meal.  But I would never risk this without a bit of research first, looking at online reviews and preferably asking friends for their personal recommendations. If I am not sure, I don't take any chances and eat before I go out, just saying to the staff, "I'm not eating, but I'll order a drink" without any explanation.  I actually find that much easier than saying, "I'm a coeliac" because they then try to persuade you to try their gluten free menu which can be a bit hit and miss. 
I hope others will chime in but I just wanted to reply to say you are certainly not alone in this.  I do hope that over Christmas you will find a few treats you can eat at home.
Cristiana
 
 

@DayaInTheSun,
Have you been checked for nutritional deficiencies?  The gluten free diet can be low in the eight essential B vitamins.  Most Celiac are low in Vitamin D, which helps calm the immune system.  Thiamine (Benfotiamine) helps calm mast cells so they don't release histamine at the slightest provocation.  Taking a B Complex and Benfotiamine will help.  
P.S. Covid can deplete Thiamine stores.  Physical stress, like an infection or injury, as well as emotional stress, require more Thiamine.  

Two things:
1. If you are using drops 3x a day you should be sure to use preservative free. The preservatives themselves can cause irritation.
2. If the problem does not resolve, you may want to have a rheumatologist check for Sjogren's. There appears to be a relationship between celiac and Sjogren's.

Let me "ditto" Cristiana's welcome to the forum, @DayaInTheSun! Many in this online family can identify with your struggle.
With all of your food sensitivity/intolerance issues you probably should research MCAS (Mast Cell Activation Syndrome) and consider a low histamine diet.

Hi @DayaInTheSun
Welcome to the forum!
I've been a Mod on this forum for some years now and your feelings are shared by many of us.   
I am not sure how long you have been diagnosed, but in my own case I do find that time has helped.  It was pretty exhausting at first trying to explain to friends but they now have a pretty good grasp of coeliac disease and what it entails, either because they've hung around me long enough or have got to know other coeliacs who have educated them.  Also, two of my close friends are coeliacs and another has become allergic to yeast and with that has developed a shed load of other intolerances, so we either cook for each other or tend to socialise over coffee or just a visit to the pub, or meet for a picnic.
I now have found a few trusted restaurants and pubs where I can relax and enjoy a meal.  But I would never risk this without a bit of research first, looking at online reviews and preferably asking friends for their personal recommendations. If I am not sure, I don't take any chances and eat before I go out, just saying to the staff, "I'm not eating, but I'll order a drink" without any explanation.  I actually find that much easier than saying, "I'm a coeliac" because they then try to persuade you to try their gluten free menu which can be a bit hit and miss. 
I hope others will chime in but I just wanted to reply to say you are certainly not alone in this.  I do hope that over Christmas you will find a few treats you can eat at home.
Cristiana
 
 

Hi @DayaInTheSun
Welcome to the forum!
I've been a Mod on this forum for some years now and your feelings are shared by many of us.   
I am not sure how long you have been diagnosed, but in my own case I do find that time has helped.  It was pretty exhausting at first trying to explain to friends but they now have a pretty good grasp of coeliac disease and what it entails, either because they've hung around me long enough or have got to know other coeliacs who have educated them.  Also, two of my close friends are coeliacs and another has become allergic to yeast and with that has developed a shed load of other intolerances, so we either cook for each other or tend to socialise over coffee or just a visit to the pub, or meet for a picnic.
I now have found a few trusted restaurants and pubs where I can relax and enjoy a meal.  But I would never risk this without a bit of research first, looking at online reviews and preferably asking friends for their personal recommendations. If I am not sure, I don't take any chances and eat before I go out, just saying to the staff, "I'm not eating, but I'll order a drink" without any explanation.  I actually find that much easier than saying, "I'm a coeliac" because they then try to persuade you to try their gluten free menu which can be a bit hit and miss. 
I hope others will chime in but I just wanted to reply to say you are certainly not alone in this.  I do hope that over Christmas you will find a few treats you can eat at home.
Cristiana
 
 

Hello all
I am taking some time out from work today to make my annual Christmas cake along the lines of a tried and tested English recipe which means a fruit cake, with marzipan  and icing.   As usual, I've left it too late - we're meant to bake these things some time  in advance to improve the flavour.    I never remember.  But it never seems to matter!
I thought I'd share it in case any UK coeliacs still haven't made theirs and don't have a recipe, or any of my friends across the Pond want to try making one.  Do you make iced fruit cakes like this in the US for Christmas? - I have no idea!
I adapt it slightly as instead of fondant icing I make Royal Icing which sets hard and you can create exciting snow scenes with it if you can find any tiny model houses, churches and trees to put on it!  (my Mum used to do this).  
https://www.coeliac.org.uk/information-and-support/your-gluten-free-hub/home-of-gluten-free-recipes/1511804/
With thanks to the charity Coeliac Uk for this recipe.
Cristiana
 

In the USA we also do a fruit cake that probably has UK origins, and my grandmother's always included a fair amount of rum. I just found these: