ceslater

Thanks for the messages of support. My GP has given me the number of the gastrologist to chase them up. I said I shouldn't have to chase this up - I expect them to do their job!

I then contacted the secretary for the gastrologist and of course got through to an answer phone. 

This ridiculous process is sending a message out that coeliac disease is not serious, and there's no rush to make any changes. That's dangerous. Anyway ... I'll keep waiting and phoning, I suppose! 

Thank you to both of you for replying. I'll check the results given been lost. Honestly, with an anti-tTG of 614.and a father who's confirmed, I know I have it so I wouldn't be going through another gastroscopy again. Hopefully they're just very very.... very slow! The time length of May to Sept sounds familiar! 

Late response, but I'm interested to know how long it finally took to receive your results. My initial NHS blood test took one week to come back with an anti-tTG more than 60 times higher than the strong positive of 10 (614). That should be enough for a diagnosis, given my dad has confirmed coeliac. I waited 4 months staying on a gluten diet before my gastroscopy. They tried to postpone it again but I said I wasn't waiting any longer. I finally had it done. I've gone on a gluten-free diet. It's been 11 weeks and I still haven't heard anything. 

In the meantime, my daughter had a blood test - her anti-tTG was 562 so very high. They suggested she wait for a gastroscopy. I really don't see the point - it feels insulting to ask that of a 17 year old, and a farce. My daughter has fainted whilst at school due to a vit D deficiency and she's anaemic. Therefore, waiting is a risk to her health - it's abundantly obvious she has coeliac disease. I told the gastrologist she's already started a gluten-free diet because it's too risky to wait so long for an inevitable result which has only one possible treatment. My friend died from bowel cancer because of celiac disease - asking a 17 year old to risk a perforated bowel no matter how low the risk for an outcome we already know, is completely unreasonable. 

Hi, I know this is 4-year late response, but I had no pain (just lots of bloating and diahorrea) before being diagnosed. Since going on a gluten-free diet, I'm experiencing increasingly worse abdominal pain, mainly on the right hand side. I think it's constipation as a result of cutting gluten out, but it's horrible. I had no deficiencies as an undiagnosed coeliac either - my iron heamoglobin levels were on the very high side of normal (I eat a lot of liver pate). I don't like all the pain! Did yours ever stop with the gluten-free diet? I need something to stop it. 

Update, I asked to see my blood test results and I'm not deficient in anything. My thiamin levels are normal. I've asked for a bone density scan. My iron haem levels in my red blood cells  are on the high end of normal, with iron serum levels right in the middle of the normal range.

My daughter's recent anti-tTG level is over 500. She's anaemic and has started a course of iron tablets.

Many thanks, will do. I have Glucokinase MODY, which is a type of diabetes where glucose levels are mildly elevated. It doesn't require medication, and isn't an autoimmune disorder.  My dad also has mildly elevated glucose levels. It's thought that the glucose receptors in the pancreas have a slightly higher threshold before insulin is released. I'm not underweight ... ideal BMI.  The thiamine is worth checking out. 

Thanks for the info. I haven't had that checked, but will enquire about it. I have a GP appt on Monday so will ask then. I'm pretty sure I have some vitamin and mineral deficiencies that had led to the tori, plus I have dry eyes (vit A), I've had bad palpitations and an irregular heartbeat, I have migraines, etc. and ehile not at all overweight, I've been pre-diabetic. I'm sure it's all related.

That's the reason I've asked for a bone density check. I don't want to guess. My minerals levels were completely healthy in my October blood test, and higher than average amounts of calcium have to be present in the mandible in order to grow mandibular tori - the calcium has to already be in the bone matrix to be used to grow them. Hypercalcaemia is as damaging as hypocalcaemia, so I think it's important to check for any depletion in my bone density before starting on the tablets. And I don't want my tori getting even bigger - they're 1/2 cm off touching so they're already big. It's possible that some people with coeliac adjust by producing more metal-shifting enzymes to counter villi damage ... this may be the case with me as I'm not iron deficient. I think it's more that I'm lacking in vitamins. Lack of K2 would potentially assist tori growth. 

Hi Archie, I've recently gone gluten free. I've noticed exactly the same as you - hardening of stools but also increased flatulence. I think this is for 2 reasons:

1) Our bodies are finally digesting food, and spending longer digesting fat and protein whereas before, some fat and protein was going straight through. (Yellow-orange faeces are causes by poorly digested fat). But this meant that gas caused by fermentation of carbohydrates, which take less time to digest, wasn't getting trapped behind protein (this takes around 4 times longer to digest). 

2) Because our stools are now much harder (sorry to be graphic but mine were always very soft and sometimes even not much more than water), the gas is getting trapped behind the harder stools, whereas before, it could get out easily. 

Hope that helps! That's my theory! 

Hi, I was wondering if any other members have coeliac disease and mandibular tori. I have both, and a Google search led me here, to a 20 year old post where 2 group members also had both. Mandibular tori are bony growths on your lower jaw. They are uncommon, with only around 2.7% of the general population having them. They're believed to be caused by grinding teeth, high mineral content in the bones, and some vitamin deficiencies can be linked. My tori are big. I've recently been prescribed long-term calcium and vitamin D3 tablets. I already take D3 and K2. You need K2 to help calcium to be deposited correctly. I've requested a bone density scan. I'm 50 and have recently been diagnosed with celiac disease. My dad was diagnosed at 62 and was anaemic and had osteopena by then. My blood mineral levels are all healthy ... if anything, on the higher end of normal. My Anti-tTG level was 614 in October, so very high. I've just had a gastroscopy done ... waiting for the results. I've requested a bone density scan before I start with the calcium tablets because excess calcium can cause kidney stones, harden arteries and cause heart problems. I consume a huge amount of cheese and milk every day and always have done so I don't believe I'm deficient in calcium. I did a lot of high impact sport when I was younger which would have helped  my skeleton should be healthy. I believe I have tori because of vitamin D and K deficiency (I now take supplements) coupled with good amounts of existing calcium and high bone mineral levels. You just can't grow them unless there's a high amount of mineral (calcium) content in your jaw.

Anyone else have both celiac disease and tori? It's a rare combo but I'd like to know anyone's theory and if their bone density is normal.