cristiana

Hiya @sadiec123s. 
I am not sure this will be terribly helpful, but in case, I'll share a couple of things here.
Rather than aggression, my mental health struggles were anxiety-related. I am sure there was a connection with my low B12 levels, and low iron, because once those were addressed I did start to feel better.  Have you been checked for deficiencies?
https://www.webmd.com/vitamins-and-supplements/what-to-know-about-vitamins-and-mental-health
Also, Dr Steve Llardi's book helped me a lot, too.  The Depression Cure: The Six-Step Programme to Beat Depression Without Drugs.  It points out some lifestyle changes that can really help us to feel better:   physical exercise;  omega-3 fatty acids; natural sunlight exposure; restorative sleep; social connectedness:  meaningful, engaging activity.
Cristiana
 

@cristiana, good points! Never thought about the shoes and she lives in tight waisted shorts- Thank you! 

I had rib pain, but also hip and leg pain - google sacroiliac pain, it's common in coeliacs.
SI joint pain affects the hip, buttock and thigh area.  When I had it at its worst it was incredibly painful, a sort of burning sensation. If this is what your child is experiencing, she may find it helpful not to wear tight jeans or waistbands.  Any pressure around the area exacerbated the pain greatly.  Also, I am sure the lower quadrant bloating I was experiencing at the time made things a whole lot worse, that internal pressure seemed to add to the pain.  
One other thing is that it is important that your daughter wears the right shoes, avoiding very flat unsupportive soles or heels, and doesn't overdo exercise that jarrs the joints. 
The good news is that for me it did get much better as my gastric symptoms improved, particularly the bloating - but it did take a few months. 
You may find these links helpful:
https://www.spine-health.com/blog/common-triggers-si-joint-pain-and-how-prevent-flare-up#:~:text=The SI joint can become,the joint to flare-up.
https://pubmed.ncbi.nlm.nih.gov/19504097/
If your daughter is experiencing rib pain, that could be costochondritis.  I had that too, and a similar sort of burning.  Again, when my GI symptoms improved so did the pain.  Bloating will still kick it off from time to time.
But I am glad you are having D levels checked, as low levels can contribute to joint pain.

Hi Cristiana,
You’re spot on, I am from the UK! 
In terms of eating gluten prior to the blood test, I only had a week in between requesting and having it done but I think it would be accurate in terms of how much I’d eaten, I have two slices of toast most mornings and gluten included in most other meals throughout the day.
Thank you for the article, as you said with the family history it is probably correct that it should be investigated further. I’ll contact my GP on Monday and ask for further investigation, as you said I know they aren’t massively over the normal limit but must be a ‘normal’ range for a reason and if it’s come back above it then it needs looking at! 
I’ll continue my diet as is for now so then if I do have further tests then they should be accurate results.
Thanks again, Matt
 

Those iron tablets are probably your current culprit for stomach pain. I am also anemic and was prescribed the iron tablets as well. I wouldn’t wish those things on my worst enemy! They constipate me horribly and cause the most awful abdominal pain! I refuse to take them. I’m trying gentle iron right now and I think it’s still bloating me. 

Welcome to the forum, @cjjones5969!
Just out of curiosity, if you had no symptoms, what led to your diagnosis?
You may have developed some additional food intolerances which is very common in the celiac community, particularly with foods whose proteins are similar to gluten. Chief suspects are dairy and oats, even gluten free oats. The protein casein in dairy and the protein avenin in oats are similar to gluten. But it can be almost anything. Those two are very common offenders, however.

@trents  @Vickey Matteson   Trents makes a very interesting point.  I did not have gastric symptoms initially but about six months before my diagnosis I had very odd liver function test results, iron deficiency and anxiety.  I developed gastric symptoms just prior to my diagnosis - I honestly think that if I hadn't, my doctors would still be wondering what was causing those other issues.

Good point, they should never have cut this from the syllabus.
 

Welcome to the forum, @Vickey Matteson!
What you describe is actually very common in the celiac community. We call it "silent celiac disease". Silent in the sense of not causing significant discomfort or distress. After diagnosis, many silent celiacs look back and realize they did have some symptoms but they were so minor as to not grab their attention or they were symptoms of a nature that they would not have connected with celiac disease. Given enough time, and as damage to the small bowel villous lining progresses, symptoms will eventually appear.
Who knows how long before your diagnosis the onset of your celiac disease occurred. The time between onset and diagnosis may have been many years or only a few. You were born with the genetic potential for developing celiac disease but that doesn't mean you had it from birth. Almost 40% of the population has the genetic potential to develop celiac disease but only about 1% actually develop it. It takes both the genetic potential and some kind of triggering environmental or health event that turns the genes on, such as a viral infection or frequent antibiotic treatments. 
So, since you say you can eat gluten and not have a reaction and you have no symptoms, how is it that you got diagnosed with celiac disease? What led to that? There must have been some lab work or health issues that prompted your physician to test you for celiac disease. There are over 200 known symptoms associated with celiac disease and most of them have nothing to do with GI distress. Most people (and unfortunately, many physicians) only think of classic GI symptoms when considering celiac disease. What led to your being tested for celiac disease?

Thank you cristiana, I will certainly mention it.
I will check out Coeliac Uk also, seems like I have a weekend of reading ahead but I want to make sure I go armed with all the correct information. 

@CeeBee1807
Forgive the brevity of this post CeeBee as I cannot write a lengthier reply just now, but I have just read your post and wanted to say I think you are onto something. 
Do mention to your GP that you already have a relative with coeliac disease.
Do also take a look at the Coeliac UK website before you see the doctor, they have a whole section on  how to get diagnosed in the UK.
 

Hello @Pgomez300 and welcome to the forum!
Firstly, I ought to say I am not medically qualified.
However, I remember asking my GP about lumps in my abdomen.  They were very noticeable when I lost a lot of weight when I was first ill with coeliac disease.  She laughed and said, "It's fat!"  Oddly enough a friend of mine has just found a very large lump near her belly button and the diagnosis was a lipoma, a fatty lump, too.  
So what you are noticing might be that.  Or you could also have an umbilical hernia, which is what I have too.  It hasn't changed in years, it's fatty tissue rather than my gut and if I put on weight or am wearing too tight clothes sometimes I have pain there.
The fact you have a rash there might just be coincidental?
I am a great worrier when I get weird symptoms.  So I get that you are worried, but try not to. 🤗 There could be some really simple explanations.
But obviously, not being a doctor we cannot make that call.  Well done for getting it checked out. Do let us know how you get on.
Cristiana

I recall some statistic I heard some years back, that in powdered chocolate milk there were something like 25 different stages in the production process taking into account all the ingredients.  I can see that if this is true, the more stages there are the more chances there are for cross-contamination.  Eating whole foods helps minimise or totally eliminate this risk.  It took me several years for my tTG levels to return to normal, and looking back maybe processed food could have been part of the problem.  Definitely worth trying cooking from scratch.

Try reducing your omega 6:3 ratios.  That is why fish oil works, but it is better to simply choose foods that are low in omega 6.  And increase potassium intake.
Similar to the DASH diet.  Increasing the potassium to salt ratio above 2:1 is heart healthy, but the DASH diet did it by restricting salt instead of increasing potassium.  Potassium deficiency can increase pain and inflammation in people with rheumatoid arthritis (RA).
Salmon is omega 6:3 ratio of 1:14 while sweet potato is 14:1 and white potato is 3:1
Tomato are around 14:1 but I find if I cook tomato sauce 3 hours like my granmother did it seems to modify it.
Higher ratio of plasma omega-6/omega-3 fatty acids is associated with greater risk of all-cause, cancer, and cardiovascular mortality: a population-based cohort study in UK Biobank
 

tumeric has to be supplemented with a little black pepper for your body to metabolize it. It just takes a little bit.

Thanks for drawing our attention to this, Scott.  I have no idea about this in the UK, I think I need to do some more homework!  

@hilly
Sorry as this is a blind post as I have a lot to do today and haven't read the entire thread. 
But I had bad bloating for a while, and at my gastroenterologist's suggestion after a three week trial of going entirely dairy free  I found relief.   I reintroduced dairy gradually and am pretty much OK with it now.
 I also found heavy iron supplementation added greatly to bloating.  For me, bloating gets to me either in my lower gut or in my stomach and upper back, and I once thought I might be having a heart attack the pressure was so immense.  I then remembered I'd taken some iron that morning.   If you are on iron, you may wish to try a different supplement. 
My GP put me onto much more gentle iron fumarate tablets at one point,  suggesting I took them an hour before breakfast, with water, and that really helped.
Also, take a look at the low FODMAP diet.  Although intended for sufferers of IBS, it suggests foods that can help lessen bloating.

In general I'm all for a formal diagnosis, except in cases where someone gets very sick when they eat gluten, and have already been on a gluten-free diet for a long time and don't plan to eat it again anyway.
There seems to be more drawbacks that keep popping up with being formally diagnosed--at least here in the USA. I can testify that it's definitely harder to obtain life insurance, and if you can get it the premiums are quite a bit higher than if I did not have it, at least from my fairly recent experience when getting a new policy. 
@Ginger38 you're very close to the end of your challenge, so let us know how it turns out.

Just to add something here... if any people in the UK are reading this, there can be definite advantages if you are formally diagnosed coeliac,  in terms of getting extra support from the NHS.  For free you get to see a nutritionist, additional vaccinations if deemed necessary, in some areas prescriptions for gluten free food; bone density scans, annual blood tests and reviews with a gastroenterologist, plus it has been my experience I've been able to see a gastroenterologist without a GP's re-referral when I've had complications. 
That said, I don't know what impact there would be on health insurance; but I have found that when it comes to travel insurance I have had to declare it but it hasn't made any difference to the premium.
However, I realise things can be very different in other parts of the world, and I am not sure where you are from, @Ginger38
 

Agreed, @Scott Adams.  
 

It's always best to get any chest pains checked out by your doctor, but as @cristiana mentioned, the other symptoms do sound like they could be related to the gluten, and the chest pains may be as well, but it's always a good idea to mention this to your doctor.

Hi @Ginger38
Well done on your challenge... nearly there.
I noticed odd shaking in my voice - I recall my voice sounded shaky - it was really weird.  Feeling off balance is something that people have posted about a lot to do with gluten exposure.  Ditto forgetfulness and struggling to find words.  Gluten assaults the system in many, many ways.
Once you are able to go gluten free, I expect you should see a gradual improvement, esp. if these are new symptoms to you.
What is the chest pain like - have you had it checked out?  
 

Hi from the UK also (up north).
Have you heard of the Coeliac and gluten-related disorders ( neurological) researchers / specialists at NHS Sheffield Hospital and Uni of Sheffield? They are leading the way on the blood test for TTG6 (TTG2 is related to Coeliac disease). TTG6 is specific for neurological and gluten ataxia. These patients may or may not test positive for Celiac Disease.
If you could get a referral there it may be helpful? But not sure how easy it would be to get referred! but you could ask your GP? Or your Neurologist whether they are familiar with gluten-associated neurological disorders and the antibody testing of TTG6 developed by the team (available for research but trying to get it available). There’s presentations online free to watch also.
Search for Professor Marios Hadjivassiliou , Prof David Sanders…
 

Welcome to the forum, @RedPandi!
I don't know that I'd make too much out of the variation in your reaction to different gluten-containing foods. It could be due to many things including the amount of gluten in different sources, how full or empty your gut is at the time of consumption, the buffering effects of other ingredients on the rate of digestion/absorption and variations in your metabolism at the specific time of consumption. Also, there are different strains of wheat which seem to make a significant difference in how people react to the gluten in foods they are used in. For instance, on this forum we have gotten more than a few anecdotal reports of celiacs traveling to foreign countries and finding they are able to eat items in those countries made from wheat without issue. And more than a few report they can eat sour dough wheat bread without problems.
But I do want to make sure you are following the most recent protocols for the gluten challenge since older protocols are still out there on the web and also being propagated by some medical professionals. The current protocols call for the daily consumption of 10g of gluten or more for at least two weeks before getting tested. 10g is about the amount found in 4-6 slices of bread. To be safe, I would go for 4 weeks. You don't want to waste the torture experience.

Hello again @kate g
I wonder if you are posting from the UK?  We get a lot of people from the UK posting on this forum because I don't think Coeliac UK have their own. (It is an excellent organisation, by the way, and well worth joining for its gluten-free shopping guide/app.)
I ask as in my own case, the only NHS tests I was offered  for deficiencies were B12 and iron.  I suspect, if you are in the UK, you will have only been offered those on the NHS and the iron test came back deficient, hence your daughter being put on a liquid iron supplement.  If it is Floravital, that's great, it is gluten free, but be careful as the packaging looks very much like Floradix, which contains gluten.  
I ended up seeing a private, highly qualified private nutritionist and even she didn't offer me a deficiency test, other than one for Vitamin D.   Without any evidence, she put me onto a general supplement which gave safe daily levels of a wide range of vitamins which did help.
For heavier supplementation, one has to always be careful of over-supplementing which can be dangerous, so it would be fantastic if you can get your GP/gastroenterologist to test for other deficiencies, then monitor the situation.
Regarding your daughter's high tTG levels, I am sure that in the past few years someone did post with very high figures on this forum, in the thousands, but I cannot find the post now, of course! When I was diagnosed the local NHS pathology labs were reporting that blood test with a cut off at 100, so one only ever knew as much as that.
For the time being, I do hope the school is being supportive?  
Cristiana