cristiana

Hello @Paula Andrews
I started to get a whole host of new pains around the time of my diagnosis and afterwards, quite apart from the expected gastric pain.  Pelvic pain was caused by bloating from dairy products; pain in my chest due to bloating caused by iron supplements; costochondritis in my ribs, which was a dull diffuse pain not emanating from the sternum which is what all the forums tell you, but it can be along the ribs too and that's where I had it; pain in my sacroiliac joints (worth googling, something coeliacs are prone to) which referred especially to my left buttock and thigh, felt like my skin was on fire, and last of all pudendal pain, which made sitting and driving uncomfortable.
Now, it took me almost a forum record of 8 years to get my antibodies to normal levels, despite being one of the most careful adherents to the diet (although there was no doubt cross-contamination), but as my blood went back to normal, things definitely improved.  I am still occasionally get pain in the aforementioned places but that can be due to glutening, bloating or kicking pain off with heavy lifting, depending on which part of the body is affected.  I sometimes think pain sites have a memory (that's not meant to be a scientific comment!) and it doesn't take much to set them off again. But now the pain is nowhere near as bad.  
I would say do listen to your body - for example, if walking hurts your sacroiliac joints, don't over do it.  Also, if you think an element of what you have is muscular, you might find a nice 20 minute warm soak (not hot) with a handful of Epsom salts helpful.   It helped me relax and sort of kick the pain cycle.  But be careful when you get out of the bath, it can make you woozy.
It might be worth keeping a food diary to see if any foods are causing bloating which can be a cause of pain.  At my gastroenterologist's suggestion, I gave up dairy for a few weeks and that really helped (coeliacs can be temporarily dairy intolerant while they heal) and also my GP gave me some gentler iron supplements which reduced bloating too.
Cristiana
 

Hi @MTAC
Welcome to the forum.  I am so sorry to read about your situation.  I'm a UK coeliac so I thought I'd add this  to Trent's and Scott's excellent posts.
Here the UK my TTG test results frequently lag behind my other annual lab results.  I think the longest it took was a couple of weeks, but from memory on this forum I've read at least one other person had to wait three weeks or more.  I've never understood why this particular test takes so long to come back, but it does seem to be the way it is.  I wonder if my American counterparts on this forum have the same issue?
Anyway,  it is dreadful that you weren't told, but I have friends and family in the healthcare sector and I know that staff are often so stretched, somethings are getting missed, despite their best efforts.  (It's happened to me, too -  I looked up some blood results recently on the NHS app to find that my cholesterol levels were elevated and yet my GP never told me.    I dread to think what they are now and I keep meaning to do something about them.)  Anyway, it is so good you asked for the blood test results and that will be an excellent habit going forward.  I've taken to getting my consultant to print them out now, or I print them out when I get home off the App.  
I hope you get some more clarity in the next few days.  Going forward,  I recommend joining Coeliac UK - they do a wonderful App and a Food and Drink Guide that will make it easier for you to shop.
Cristiana

Hi @Sarah Grace
I'm a British coeliac too, and have had quite a number of different types of migraine.
***Are you under a gastroenterologist and receiving annual coeliac blood tests to test for compliance, and perhaps also for deficiencies?  If not, I think that is worth considering.  If gluten is still sneaking into your diet that could be the issue.***
That said, for me there was a huge improvement when I went gluten free, but I still get nauseating migraines from time to time, and a new type since going gluten free - aura migraines where I lose my central vision (the middle of my vision looks as if water is running down glass).  This tends to be triggered by small screens and close work.   
I know that in the past thirst was a massive trigger for me, and also low blood sugar.   Another contributor for me is tension in my neck caused by poor posture or cold weather, and certain light conditions, like low sun in the winter, can start one up. 
One other thought - have you looked into sleep apnea, which can cause migraines?  
But in any case, I think I'd be inclined to contact the Migraine Trust if you haven't already.  
https://migrainetrust.org/
Cristiana
 

Hiya..I was 48 when diagnosed two years ago and I was in right bad way but strict gluten-free diet you will recover I promise x

Hi CathiJean,
Wipe those tears my friend.  Finding out that you have celiac just gave you the cheat code on how to start feeling better!  It may feel like a loss right now, but honestly within 6 months you will start feeling better.  Within a year you will look back and wonder how in the world did I survive feeling like that for what feels like a lifetime?  You mentioned 15 years, that's about how long I have been really ill as well.  I had told every doctor I saw that I kept getting sick, infections, hair loss, joint pain, etc. and nobody would listen to me until I turned 45.  I went in for a colonoscopy and the doc says how often do you have bowel movements and I said usually between 10-15 times a day.  Suddenly I had someone actually listen to me and the testing began.  What I can tell you is use this forum, talk to peers, read everything you can about how to gluten-free your kitchen, encourage your family to participate in your journey (trust me they love you enough to make the effort), how to order food in restaurants, and how to avoid cross contamination.  Accept that you will make mistakes and allow yourself grace as you implement your new normal and have a clear understanding that going gluten free will begin healing your body in ways that you will not even begin to understand until you actually do it.  So, have faith that the nutrient deficiencies that you are probably experiencing right now can be corrected and you are on a bright path to feeling SO much better.  Think about how incredible your mom journey is about to become as you begin to feel better!!  Your kids are going to be amazed at your energy levels, ability to play and go do stuff...you are leveling up knowing that you have Celiac.  Knowing gives you power my friend, harness it and have gratitude that it was discovered...even if the docs missed it - you know now and keep moving forward.  You got this!! 

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

This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):
 
 

Hello @Cathijean90
Firstly, welcome to the forum, you have come to the right place!
I know this is much easier to say than to do, but try not to worry.  Whilst it is awful on so many levels that you have only just found out that Coeliac Disease is the issue behind all your problems, when you could have known 15 years ago, as Trents has said, it is really not at all uncommon for people to have symptoms for years before the doctors know what they are dealing with. 
I was worried, too, that I'd never get better when I was first diagnosed.  My nutritionist said it wasn't too late and I didn't believe her!  But you know what -  I am feeling so much better now. 
I've known of people living near me who were diagnosed in their 70s and 80s and have bounced back, and my consultant has even diagnosed someone in their 90s!  So being diagnosed older is something that also happens a lot.
I am now in my 50s but my first symptoms, looking back, probably started with bouts of diarrhea in my teens and terrible nauseating migraines in my 20s, with a mouth full of ulcers twice in my 30s, aura migraines starting with my first pregnancy at 34, hallucinations with both pregnancies and a pre-term baby with my second pregnancy.  Weird liver function tests suggestive and iron deficiency, which sent me into a spin because my GP said it might be a type of cancer, then blood in my stools and clinical anxiety in the months prior to my diagnosis.    Wow - what gluten can do to someone!  But now, apart from a few minor issues with aura migraines, these issues have gone away.  It has been so worth giving up gluten, people say I have good self-control but frankly, and I am sure you feel the same, knowing how sick gluten can make us, I'm not remotely interested in eating gluten ever again!
I've recently discovered my GP didn't tell me my cholesterol is creeping up when he tested me three years ago.  If I had known I'd have started being much more careful with my diet.  I dread to think what my cholesterol levels are now,  I'll have to do a test sooner or later but I do need to try to do something about it now.  So I do relate with your situation. To have not had the diagnosis passed onto you is awful. 
But the good news is you do know now.   Also, you will be taking your diet seriously, which will give you the best chance of a good recovery.  
Kick gluten out of your diet, get your doctor to run some tests to see if you have any vitamin deficiencies, and address those, and also see if you have any thyroid issues which occasionally affect coeliacs and can be easily treated.   Build your strength up with the best whole food you can manage, and try to take one day at at time. 
On having children:  my friend had a series of miscarriages before she was diagnosed with coeliac disease, and then when she started a gluten free diet, no more - she carried two more pregnancies to term.  
I am so glad you have a faith, my Christian faith has been a huge help to me on my journey.  
Two  books on anxiety and depression too, helped, if you feel you are struggling with either or both.  The Depression Cure: The Six-Step Programme to Beat Depression Without Drugs, by Dr Steve Llardi, and At Last a Life by Paul David.  Both available online.
Come back to us if you have any more questions.  You are not alone.
Cristiana
 
 

Hi @Heather Hill
Welcome to the forum.
What I do find is that legumes seem to exacerbate both stomach ache, bloating and  backache symptoms such as lentils, beans etc, whilst the gluten containing grains do not obviously seem to.
I definitely found lentils and other legumes caused me similar symptoms to you in the early days adopting a gluten free diet.  I think my gut was so sore, all that fibre really hurt it.   Also, oats had the same effect, yet before my diagnosis and going gluten free I could eat them for England.  Thankfully, some years later, I am eating pure oats (ones kept free from contamination with gluten) without issues, but even for a while I couldn't eat those.
It is good you are having the biopsy.  Let us know how you get on.
Oh - and one other thing.  If you are taking iron supplements, that can cause bloating and digestive issues.  
Cristiana

Sometimes celiacs can also have other things like lactose intolerance which is fairly common. Also research fodmap foods, it's quite complicated but there are some other foods which can cause digestive issues. For me it's too many onions and garlic.

This might be helpful to you at this point: 
 

Just had a letter through from the Celiac team, they’ve diagnosed me through my bloods, no endoscopy/biopsy needed.

I guess I’ll be sticking around on this forum and I’m sure I’ll be back soon.
thanks for all your help 

The tTG-IGA is considered the centerpiece of celiac disease blood antibody testing. Your test results exceed 10x normal range so you could be officially declared to have celiac disease without going through an endoscopy/biopsy of the small bowel lining. As you used the term "bloods" to refer to your antibody testing, I am assuming you live in the UK and it has become common practice there since the COVID pandemic years to dispense with the endoscopy/biopsy when the tTG-IGA score reaches 10x normal. Though I would not go so far as to say it is yet a universal practice to do so. So, I would hold off on the gluten free diet until you find out if you will be required to undergo an endoscopy/biopsy of the small bowel. If you quit gluten now, healing of the small bowel lining will commence and it may generate a false negative biopsy by the time you get to the procedure. So, ask that question of your doctor. That is, if he feels a need to refer you to a GI doc for an endoscopy/biopsy.

For individuals who have experienced negative reactions to the flu vaccine, there are alternative formulations that may reduce the risk of allergic responses. Traditional flu vaccines are typically produced using egg-based methods, which can pose issues for those with egg allergies. However, there are now several egg-free options available, such as cell-based and recombinant flu vaccines.
Recombinant Vaccines (e.g., Flublok Quadrivalent): These are produced without the use of eggs and are grown in insect cells, making them a suitable option for individuals with egg allergies.
Cell-Based Vaccines (e.g., Flucelvax Quadrivalent): These vaccines are also egg-free and are produced using mammalian cell cultures, which can be a safer alternative for those with egg allergies.
Other Considerations: If you have had a reaction to a specific component of the flu vaccine (e.g., gelatin, preservatives, or antibiotics), discussing your medical history with a healthcare provider is crucial. They can help identify vaccines that exclude these ingredients.
It's important to consult with an allergist or healthcare provider to determine the safest option based on your specific allergies and medical history. They can also provide guidance on pre-vaccination testing or desensitization protocols if necessary.
Also, at @trents mentioned, could you be getting hidden gluten in your diet? Do you eat in restaurants? If so, this could be why you still have high gluten antibodies.

Hi @Karmmacalling
I'm very sorry to hear you are feeling so unwell.  Can you tell us exactly what sort of pain you are experiencing and where the pain is?  Is it your lower abdomen, upper abdomen etc?  Do you have any other symptoms?
Cristiana

I did suffer with gastric symptoms before diagnosis, but got all sorts of weird and wacky symptoms after going gluten free.   Things got much better once my antibodies fell to normal levels, but it took years (please don't panic, many people's go to normal levels relatively quickly when following a gluten-free diet).
Causes of the symptoms you mention that I also experienced were iron supplements, a temporary dairy intolerance (this is common in coeliacs and should pass when your gut heals properly), and eating oats, as mentioned above.  Other symptoms I got were musculoskeletal pain after diagnosis, but again, once my coeliac blood tests were normal, I had no more pain.
I did notice patterns emerging in foods that I reacted to and learned to steer clear of them, then gradually reintroduced them when my gut healed, such as soya, pure oats and dairy products.    You might like to keep a food diary.
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