cristiana

@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
 
 

Many others here have reported having both colitis and celiac disease, and you can find some older posts here:
https://www.celiac.com/search/?q=colitis&quick=1&type=forums_topic
 

What I really liked about this video - and thank you so much for posting it - is that he/they talked about what happens to someone vis a vis their celiac disease who is on a gluten-free diet, also active vs inactive celiac disease, and potential celiac disease. These are things that I've been very much wanting to discuss forever.
I have many other questions - but when they talked about other biomarkers, I thought of lipase. Scary pancreatic enzyme if high. One time, I ordered this test for myself and lo and behold, it came back high. I panicked. So I messaged the GI, who told me not to order my own tests (!) in addition to some other things, and so a few years passed. Then I was having some GI issues recently potentially related to a hiatal hernia, potentially related to taking NAC (which I've since stopped), so I went in to see him again. I mentioned the lipase test I ordered on myself a couple of years ago. He looked it up on some doctor site or other that no doubt we all have access to, and one result came back: celiac disease. But that begs the question: controlled celiac disease or uncontrolled? (Anyway, for those interested, he ordered an abd ultrasound, which came back fine.) Understanding the difference between controlled celiac and uncontrolled is something I never cease being very interested in.
I also liked how in the video, Dr Han talked about autoimmunity in general. It's so sad that celiac disease and autoimmunity are not investigated vigorously, especially among Medicaid and Medicare patients. With Medicaid, if someone may have Celiac, forget it. It's almost like it doesn't exist for them.

Hi @jayjays
Reading your post something really struck me: you mention night terrors/hallucinations.  I know how scary this can be. 
Before I go any further, I must tell you that I am not a doctor or qualified to give medical advice, but I would like to share my own experience in case it helps.
I suffered with hallucinations for about ten years before my diagnosis, which scared me a lot.    My hallucinations were chiefly on waking, or when I was in a state of semi-awakeness (is that even a word?!)  They started off when I was expecting my first child.  I would wake up and see the strangest things, pretty fairy lights, rows of bunny rabbits, geometric shapes.   I know - odd!   Strangely they didn't bother me so much when I saw them, but the following day I'd remember the hallucinations and they would freak me out.  I thought I was going completely doolally. 
I have never taken LSD or any recreational drugs but I wondered if I was suffering from  similar effects.  It made me wonder why on earth people would want to take 'recreational' drugs to see this kind of thing!
As I was pregnant I was sent to see a neurologist who told me once I'd had my child I ought to have an MRI.  He had never seen anyone with my symptoms before.  A few months later they did the scan, completely normal apart from a cyst which they felt was of no clinical importance and  something I was born with.   A repeat scan confirmed this.   Interestingly, the symptoms got less severe over time and almost disappeared but started up again with a vengeance when I was expecting my second child. 
By this time I was less scared by them because after spending hours and hours on the internet I'd found accounts from other sufferers.  It appeared I was suffering from hypnopompic hallucinations and although they can be linked with various conditions, some people just get them.   I then saw another neurologist who confirmed my self-diagnosis, and he said that as I was seeing them as I was waking up he wasn't worried about them.
I understand that migraine sufferers can be prone to them.  LIke you I was a sufferer, and during that time I developed not just pain but aura migraines  with flashing lights etc.   (Also, it is worth noting hallucinations are common among the sleep-deprived).
But here's the thing:  when I was diagnosed with coeliac disease they got particularly bad again.  I was also suffering from clinical anxiety at the time (something I'd not had before) and the hallucinations made me even more anxious.    At the time my blood revealed low blood iron and borderline B12 levels.  Whether it was giving up gluten, or those levels getting better I will never know, but my aura migraines and the hallucinations have all but disappeared.
I ought to add that my sister who is a picture of health suffers from them occasionally, and also gets migraines occasionally.  She finds they hit her when she eats too rich food before going to sleep.  One other thing to consider:  Are you taking  medication before you go to bed?  If so, do see if it might be causing vivid dreams and hallucinations. I once took a proton-pump inhibitor (PPI) for gastric issues too close to bedtime and I had the most terrifying dream, and when I googled the medication I discovered that it can cause nightmares and hallucinations.  Just a thought.
Cristiana
 
  

Thanks so much, @Eldene, and that sounds an interesting drink to try.  Some people also say to try HRT but my family has quite a high incidence of breast cancer so I'd rather try to deal with this naturally.

Hello Christianna, I can confirm that Turmeric should help, as it is anti-inflammatory. You can start with a teaspoon of Turmeric and 1/4 teaspoon of Cayenne pepper. Take with a cup of warm water, with honey to taste (if not diabetic). Also excellent is a Casteroil compress on the joint(s) at night.
If allowed publishing by Scott and Co - google for Dr Barbara O'Neill, a Naturopath.

Hello @Dee4825 and welcome to the forum!
I echo @Scott Adams statement about eating out - it really is an important factor to consider.  Although most caterers have a better grasp of catering for coeliacs today, mistakes slip in - only this summer I was given a plate of gluten free food, a Ploughmans Lunch, and the baguette was normal bread!
Now, some other things that might be going on:
Temporary Lactose Intolerance
I had issues with diarrhea some time into my early recovery.  The loose bowels and frequent visits to the loo only really improved when I came off not only gluten but dairy products, specifically milk, soft cheese and yoghurt.   Are you still consuming dairy, because if so, it could be the cause.   Coeliacs can become temporarily lactose intolerant  because the villi tips, which are damaged in coeliac disease, means we cannot digest lactose properly.  Once they heal, you can reintroduce dairy gently.  Maybe give it a few weeks, then try again.  (Incidentally, during this period I was still able to tolerate small amounts of cheddar, you might be able to as well, as it is very low in lactose).
Oats
I am looking at the timing of your posts and wondering if you are in the UK?  If so, did you see a nutritionist or gastroenterologist as part of your NHS aftercare?  Mine advised coming off oats for six months to a year after diagnosis, before reintroducing them to my diet.  The reason is some coeliacs cannot tolerate oats, even the pure oats which are certified free from gluten contamination (we shouldn't be eating anything other than those, so, sadly, goodbye to Quaker Oats for us!)  Some coeliacs, either newly diagnosed or some in the long term, continue to react to oats, even the pure ones, as if they were wheat or barley.
Supplements and Medication
Have a look at the smallprint of the ingredients of any medication you use.  I made a huge mistake sometime into my gluten free diet by consuming an iron supplement, Floradix, instead of Floravital.  The former has gluten in it, but the packaging is almost identical.   (TIP:  A pharmacist told me a while back that if UK medication has a PL number on it (Product License) it will be gluten free.)
Lip Balm etc
Anything that goes on your lips - ensure it is gluten free.
***
I would encourage you to keep a food and symptoms diary during this time and see if any patterns are emerging.  You may have developed intolerances which will fade in the long run (I couldn't cope with soya products during the healing process, for example).  Remember to make sure any shared utensils you use are scrupulously clean and don't share a toaster or butter with any non-coeliacs.   Also, if you are in the UK, it is worth joining Coeliac UK even if just for a while, as they issue a fabulous Food and Drink guide (also a digital version).   It will be money very well spent.
If you have already tried the above, I remember being told when I was diagnosed that GPs are interested in referring people to gastroenterologists who have had 'new' symptoms that have hung around for more than six weeks. 
If that is the case with you, it might be worth talking to your GP.   I had to see my gastroenterologist again a few months after my diagnosis because of a lot of pain with bloating, and he gave a couple more tests just to ensure nothing else was happening (it wasn't, but the peace of mind was good to have!)
Cristiana