SandraB

I was another person with negative blood tests but a positive biopsy. I am not sure which of the blood tests they ran, but nothing turned up until the biopsy. I asked my doctor if I could see the specialist anyway, since even though I had negative blood tests, I had a lot of symptoms. I got an appointment, then a biopsy - postive diagnosis.

Fight for your health and your right to see a specialist if you want to!

THIS is v interesting because it MUST MEAN that the figure quoted over here in Britain of 1 in 100 people having celiac disease is too low. So it could be 1 in 80 then? Or something like that. REALLY COMMON. And if that were generally accepted the side effects of the disease might get more attention/funding.

AND ithe problems on blood testing mean that it is going to be very very difficult to run accurate scientific studies of the incidence of, let's say particular cancers, amongst undiagnosed celiac patients. Because all those patients who are celiac with cancers are likely to have advanced disease that could be scuppering their blood tests. My brother is showing many of the signs of celiac, but his blood test was negative. He now has Chronic Lymphocytic Leukaemia, and IF (big if) he is also celiac going off gluten could help slow its progression - at least make him feel better, stop the other symptoms. But you can't suggest dietary restrictions to someone already underweight and suffering cancer without good evidence. And how the devil would you get the evidence if the blood tests don't work in advanced celiac?

Hmm. Back to those guys with point heads in the labs - please keep the minds within the pointy heads open. If that isn't too grotesque a metaphor.

Just found some discussion on an Repetitive Strain Injury chatroom that made me wonder whether anyone else has had RSI and celiac/glutent intolerance? I have. It might make sense that a sub-section of people who get RSI from over-use on computers might be especially susceptible if they have undiagnosed celiac disease. The malabsorption problems from celiac seem to link in some cases to nerve damage, don't they - and might mean nerve damage was more slowly healed.

Anyone got any experiences, thoughts? My RSI was unusually combined with absolute exhaustion, which other sufferers didn't get, but makes sense in retrospect if gluten damage was a factor in my case, but not in others.

SandraB

Hi. Just adding to the general chorus - yes, also lazy right eye. and two children with hypermobility. which I had to some degree myself as a child. They are more pronounced - but I had been on 40 years of gluten when I had them and was still on it. and my mother (it all seems to come down the female line) with a very strange kind of dementia indeed. Had it for 15 years and is better now than when she started, thanks to serotonin reuptake inhibitors.

all v v strange and interesting.

thanks for the posts.

SandraB

This is mainly out of curiosity, I have noticed that in my family these two ? genes seemed to manifest together. I was just wondering if it is more common in us gluten intolerants. I know I suffer less with sleeping (feet and ankle) dislocations and stuff when gluten-free. I believe it has to do with fluid build up in the joints making them more prone to shift. It got better when my general edema did. Was just curious if there are others like me.

Just searched for anyone else with this - both my children have clear hypermobility and can twist and cllick their skeletons like something from the Addams family. I also remember being able to bend my joints quite a long way back as a child - have stiffened up since. I am not diag. celiac but I have been gluten free for several years since I discovered I reacted to it strongly after reintroducing gluten after 6 months on Atkins. A cousin's child on my mother's side is diag. celiac however - we have bowel cancer and hypermobility up the female line. I was eating gluten while pregnant and had been doing so for 40 years. Hmmm.

Hypermobility is genetically inherited. Does look as though they should be researching for possible links.

Try searching for Hypermobility Syndrome Association on Google, it has more on the syndrome though not on links with celiac.

Thank you so much for the post.

SandraB

Alzhiemers is connected to celiac? How so?

Hi - I think I should have said dementia rather than Alzheimer's - Dr Alessio Fasano says there are links if you search the web for his name/celiac/dementia it should come up. Other studies come up making links. One has tested some people with Alzheimer's for celiac and found no difference between them and the general population, but is a small study. Latest Mayo Clinic stuff on cognitive decline v interesting in this respect.

Interesting post on Omega 3s. I have been reading a new book on feeding children by Dr Alex Richardson "They are what you feed them". Not about celiac disease, but general nutrition. She is an Oxford University expert on Omega 3 oils and their effects - all the research at v early stages though. You need a variety of other vitamins and minerals to use the Omega 3s properly in your brain, and it looks as though these are also vitamins and minerals which celiacs tend to lack. Could this be part of the reason why we gluten intolerants suffer brain fog? Could there be a link here to Alzheimers which is also associated with celiac disease? Anyone out there tried Omega 3 supplements, or taken up fish eating and noticed an effect?

She says "the dry mass of your brain is..60 per cent fat...the type of fat in your diet can affect the way your brain works" (or the type of fat your body can absorb I assume) " Fats can influence almost all celular functions..some can even regulate your genes." We need Highly Unsaturated Fatty Acids (HUFAs). The brain needs HUFAs. I quote Dr Richardson:"Many diet and lifestyle factors can reduce the conversion of Essential Fatty Acids to HUFAs, including poor diets" (or malabsorbtion I assume). "These include vitamins B1, B3, B6, Vit C, zinc, magnesium and manganese." Well, B vits and magnesium I think are well known to be a problem for celiaccs. Women can make their own HUFAs from diet better than guys, maybe (my guess) because they create babies inside themselves. Guys pretty much have to eat fish. Omega 3s also keep the heart and other vital organs AND THE IMMUNE SYSTEM functioning properly she says. Hmmm. Some part being played here in the auto-immune process? Maybe some link to celliac tendency to other auto immune disorders, being discussed elsewhere on this forum?

Also possible links to ADD, ADHD, high-functioning autism.

Anyone any thoughts, any experience of taking Omega 3s plus the other supplements and getting any interesting results? I'm interested in the immune system especially, since my brother has cancer of the immune system - Chronic Lymphocytic Leukaemia. Which is more common in guys, incidentally.

I am probably gonna sound dumb but ya'll should be used to that by now, HA!

My questions are these....

I recognized some symptoms in myself that were mentioned here with regards to the magnesium. (tingling & chocolate (which I before going gluten-free I hardly ate chocolate, now I want it all the time). Is magnesium something that you buy OTC or do you have to have a script?

I'm currently taking Centrum Silver chewables and Caltrate chewables (i'm a whimp and can't swallow those horse pills).

Also, w/ the B-12 if your levels are normal, does taking B-12 anyway still help? I asked my dr about this a while back b/c I have low energy level most of the time and he told me my levels were fine & that taking B-12 wouldn't make much difference. Anyone have any insight or comments??

Thanks for all the good insight!

Hi. You can buy magnesium pills over the counter at any health store - it is worth researching on Google to see which people recommend. Some seem to be absorbed better than others.

Re an earlier question, I read ages ago that research now shows that a mega Vitamin B pill is just as effective as injected Vitamin B - might be worth checking for that on Google too because I can't remember where I read it.

Glad to hear the chocolate craving is a normal gluten-free diet development.

Another thing - is anyone looking at Vitamin E deficiency which seems to be associated with celiac disease too? Anyone out there experienced an improvement in any area with Vitamin E supplements or mega portions of almonds and spinach which apparently contain lots of Vit E?

SandraB

Thanks for the info. Should have taken my mag. last night(had a chopin martini at Chang's last night). I always thought chocolate cravings meant lack of calcium but makes sense-mag. makes calcium work. I started adding mag. when I had no energy and also to protect the heart. What is the relationship of anemia to B12? LindaLee

Hi again - well magnesium works for my chocolate cravings. And another thing - I notice taking it has improved my speed of reaction. Bizarre but true. So some of those kids at school who are no good at ball games may have mineral deficiencies. I was useless myself. Something to do with potassium and you can't absorb it unless you have enough magnesium.

SandraB

In the Catholic faith, it's NOT symbolism. They are the body and blood of the Lord, not just symbols. And, a host without ANY wheat can't be consecrated, and therefore would not be considered the "body of Christ."

The church does approve of the extremely low gluten hosts, but not the "no gluten" hosts. So, for a Celiac who won't risk that tiny amount of gluten, the body is not an option.

I realize that not all Christian denominations feel the same way about the host, and I do have "issues" with this. I'm a Catholic religious education teacher and I'm the lead Catechist for our First Communion and First Reconciliation classes. And, I'm also gluten intolerant, just dx. So, I'm going through a personal struggle with this issue at the moment. =(

I'm Catholic too and at our mass there is only the bread. Vatican doesn't seem to understand that celiacs cannot "risk" a tiny amount of gluten. I no longer take communion because of this. God understands, obviously. But I wish the Pope would get his head round it too.

Well - what can we do but keep trying. I am determined to get to the bottom of the problems I am having and resolve them. I love the quote in you signature "I'll try tomorrow". I failed so far but I will try again tomorrow. Sounds like you have alot of things going there and you're staying positive. Good for You.

In the last week I started to take magnesium supplements. I've tried all kinds of supplements without noticing any effects, but this was different.

FIRST - and most relevant to this discussion - I'd been experiencing terrible pins and needles in my limbs at night - whenever I turned over I'd get them in the arm I was lying on, or the arm ccovering my eyes, or the leg under the other one - it made it harder to sleep and for a very restless night. The magnesium supplements have banished this problem like magic. One night I went to a party, too much wine - the pins and needles were back. Alcohol, coffee and stress all deplete magnesium. Extra magnesium, the tingling in my limbs had gone again the next night.

SECOND - equally welcome and very peculiar result. For months (to some degree all my life) I've had chocolate cravings but recently they became overwhelming. I was sneaking off to the shops to buy chocolate bars like an alcoholic goes to buy booze. When I could stop the urge I found myself falling on my young son's Nutella jar. The magnesium pills got rid of that craving overnight. Magnesium is a big ingredient in chocolate, I read on the Internet. Chocolate craving known symptom of Magnesium deficiency. Why did my mother never tell me this? I think she may have it herself.

THIRD - my blood sugar seems far better regulated.

FOURTH - a very noticeable improvement in energy.

Internet sites say you shouldn't take magnesium supplements if you have kidney or heart problems - not without seeing your doctor. Some sites also recommend taking magnesium with B vitamins (there'll be others on this forum way better informed on that than I am). But reading up on magnesium deficiency it's striking how many conditions it seems to be associated with that are also associated with celiac disease - I wonder whether there's a malabsorbtion issue for celiacs?

Anyway - worth a try, certainly if you have any of my symptoms. Magnesium ddoesn't spring to mind as being associated with tingling and twitches but apparently it is.

Hope this helps someone.

SandraB

Hi. I've been looking at this sort of topic for months. I haven't come across any evidence that celiacs are more likely to have autistic children. That would be a sensational piece of scientific discovery if there was such a study, and we'd all know about it. I'm told by one scientist studying autism that studies so far don't show any direct link between autism and celiac disease. That seems to be accepted medical opinion. BUT if you search the web you will find that there is considerable anecdotal evidence that SOME, not all, undiagnosed children with celiac disease have behavioural symptoms which might possibly be mistaken for eg ADD or ADHD or even mild Asperger's. Prof Hans Asperger published some work on behavioural sympoms in celiac children himself, but sadly I haven't managed to get hold of a copy - not even in German - anyone got one?

The symptoms generally described (not by Dr Fasano) range from sadness, clinginess, inwardness, separation anxiety (from the mother), food fads, - eating almost only one thing and perhaps from a particular plate - fear of change, and negativity. Alessio Fasano is quoted on the web (but I haven't checked the quotes with him) as saying that "mood changes" are one dramatic way of presentation in children BUT - and this is the good news - THESE BEHAVIOURS CLEAR UP ONCE ON A GLUTEN FREE DIET.

That may be why someone's told you celiacs are more likely to have autistic children, or why you gained that impression. Since you know your husband is celiac, you'll be on the look out for any symptoms - the parents with problems are the ones who have undiagnosed celiacs in the family and can't imagine why their children are behaving oddly.

Hope that helps.