Extremely anxious

[cristiana]

5 minutes ago, Wheatwacked said:

Both. For zinc: zinc gluconate lozenges. It absorbs in the mouth. It also protects the mucous membranes from viruses. When my wife started chemo in 2004 I started taking it and have not had a cold since. RDA is 11, a lozenge is 13.3 mg.

Magnesium: I add two ounces of magnesium citrate liquid (cherry preferred) to a 12 ounce glass of orange juice. 580 mg magnesium (RDA 420); plus 37 mg magnesium and 170 mg vitamin C (RDA 125 mg) from orange juice. Start with 1 ounce and build up because at 10 ounce dose, one bottle, it is a strong laxitive. There is no upper limit on magnesium through food.

Gentle Iron. Iron Bisglycinate 28 mg. (RDA 8, upper limit is 45). No stomach upset and after several years my hemoglobin is perfect at 14.3.

Wheatwacked - not meaning to hijack this post, but do you find magnesium really dehydrates you?   I find when I take it, it makes me very thirsty indeed. 

[Sabaarya]

3 hours ago, Wheatwacked said:

Both. For zinc: zinc gluconate lozenges. It absorbs in the mouth. It also protects the mucous membranes from viruses. When my wife started chemo in 2004 I started taking it and have not had a cold since. RDA is 11, a lozenge is 13.3 mg.

Magnesium: I add two ounces of magnesium citrate liquid (cherry preferred) to a 12 ounce glass of orange juice. 580 mg magnesium (RDA 420); plus 37 mg magnesium and 170 mg vitamin C (RDA 125 mg) from orange juice. Start with 1 ounce and build up because at 10 ounce dose, one bottle, it is a strong laxitive. There is no upper limit on magnesium through food.

Gentle Iron. Iron Bisglycinate 28 mg. (RDA 8, upper limit is 45). No stomach upset and after several years my hemoglobin is perfect at 14.3.

Thank you so much for detailed explanation. I had my dietitian appointment today and was disappointed. You guys gave me more information than her. I kne everything about celiac not her. Anyways in 1 month I will have appointment with gastroenterology dietitian. Can those vitamins contain hidden gluten? I should probably get gluten free vitamins. 

[Sabaarya]

On 9/22/2021 at 12:24 AM, Ivana said:

Saba, I was 39 when diagnosed too

:). What was you symptoms? Have you had it for a long time. My symptoms have started 6 months ago…

[Sabaarya]

6 hours ago, cristiana said:

The ferritin deficiency didn't take too long to creep up to normal levels - about two months or so.  But I was taking really heavy duty iron pills.

I haven't supplemented for a very long time as my my haemoglobin is now quite high - it would be dangerous to build up too much iron as this would create too much haemoglobin in my blood causing something called polycythemia.   

The key thing in supplementation is that your iron levels are monitored, because if they go  up too much this causes other problems.  Do speak to your doctor about the frequency of this testing.  

The tingling took some months to go away.   I remember it was one of the things that worried me most.  TBH, I still get mild tingling in my left leg but I've learned to ignore it!  It hasn't got worse.   

If I could really rid myself of all traces of gluten from my diet I am sure it would disappear altogether but living in a shared household it is easier said than done.  I also seem to be extremely sensitive to gluten, I have a friend who is about as strict as me and her TTG is very normal now, mine is, stubbornly, often in the teens. 

Cristiana,what do you usually eat? Do you eat cheeses? What about cooking oils? Are they safe? I’ve talked to dietitian today and didn’t like her. She was googling whatever I asked her infront of me))). Will have gastroenterology dietitian in a month. I think she will be helpful in terms of diet. She told me today that I can eat whatever is labelled gluten free. I now that cheeses naturally doesn’t contain gluten but it might get contaminated during packaging. I really don’t know..

6 hours ago, cristiana said:

The ferritin deficiency didn't take too long to creep up to normal levels - about two months or so.  But I was taking really heavy duty iron pills.

I haven't supplemented for a very long time as my my haemoglobin is now quite high - it would be dangerous to build up too much iron as this would create too much haemoglobin in my blood causing something called polycythemia.   

The key thing in supplementation is that your iron levels are monitored, because if they go  up too much this causes other problems.  Do speak to your doctor about the frequency of this testing.  

The tingling took some months to go away.   I remember it was one of the things that worried me most.  TBH, I still get mild tingling in my left leg but I've learned to ignore it!  It hasn't got worse.   

If I could really rid myself of all traces of gluten from my diet I am sure it would disappear altogether but living in a shared household it is easier said than done.  I also seem to be extremely sensitive to gluten, I have a friend who is about as strict as me and her TTG is very normal now, mine is, stubbornly, often in the teens. 

Cristiana,what do you usually eat? Do you eat cheeses? What about cooking oils? Are they safe? I’ve talked to dietitian today and didn’t like her. She was googling whatever I asked her infront of me))). Will have gastroenterology dietitian in a month. I think she will be helpful in terms of diet. She told me today that I can eat whatever is labelled gluten free. I now that cheeses naturally doesn’t contain gluten but it might get contaminated during packaging. I really don’t know..

[Wheatwacked]

3 hours ago, cristiana said:

do you find magnesium really dehydrates you? 

Yes, but I did not realize it was the magnesium until you mentioned it.

 

24 minutes ago, Sabaarya said:

I kne everything about celiac not her.

Pretty scary thought.

http://nutrientlog.doodlesnotes.net/  I have uploaded my food log with its nutrient values not including supplements, if you are interested.

[GodsGal]

Just now, Sabaarya said:

Cristiana,what do you usually eat? Do you eat cheeses? What about cooking oils? Are they safe? I’ve talked to dietitian today and didn’t like her. She was googling whatever I asked her infront of me))). Will have gastroenterology dietitian in a month. I think she will be helpful in terms of diet. She told me today that I can eat whatever is labelled gluten free. I now that cheeses naturally doesn’t contain gluten but it might get contaminated during packaging. I really don’t know..

Cristiana,what do you usually eat? Do you eat cheeses? What about cooking oils? Are they safe? I’ve talked to dietitian today and didn’t like her. She was googling whatever I asked her infront of me))). Will have gastroenterology dietitian in a month. I think she will be helpful in terms of diet. She told me today that I can eat whatever is labelled gluten free. I now that cheeses naturally doesn’t contain gluten but it might get contaminated during packaging. I really don’t know..

Hi again!

I am sorry that your dietitian appointment didn't go well. I hope the next one is better. Here in the USA, things can be labeled gluten free and still have up to 20 ppm of gluten in them. You will want to look for things that say "certified gluten free". Most of the certification companies, like the Gluten Free Certification Company, will certify less than 10 ppm. Although the Celiac Support Association certifies less than 5 ppm.

Another resource that I found helpful is the Gluten Free Watchdog website. It is subscription based, but they have a bunch of products that they have tested. And if they find a problematic product, they call it out, notify the company, and also notify the proper authorities.

[GodsGal]

33 minutes ago, Sabaarya said:

Thank you so much for detailed explanation. I had my dietitian appointment today and was disappointed. You guys gave me more information than her. I kne everything about celiac not her. Anyways in 1 month I will have appointment with gastroenterology dietitian. Can those vitamins contain hidden gluten? I should probably get gluten free vitamins. 

Yes, vitamins can contain gluten. So, you will need to make sure that they are gluten free.

[cristiana]

15 hours ago, Sabaarya said:

Cristiana,what do you usually eat? Do you eat cheeses? What about cooking oils? Are they safe? I’ve talked to dietitian today and didn’t like her. She was googling whatever I asked her infront of me))). Will have gastroenterology dietitian in a month. I think she will be helpful in terms of diet. She told me today that I can eat whatever is labelled gluten free. I now that cheeses naturally doesn’t contain gluten but it might get contaminated during packaging. I really don’t know..

Cristiana,what do you usually eat? Do you eat cheeses? What about cooking oils? Are they safe? I’ve talked to dietitian today and didn’t like her. She was googling whatever I asked her infront of me)). Will have gastroenterology dietitian in a month. I think she will be helpful in terms of diet. She told me today that I can eat whatever is labelled gluten free. I now that cheeses naturally doesn’t contain gluten but it might get Wcontaminated during packaging. I really don’t know..

Hello again!

My daughter has quite conservative tastes when it comes to food so my repertoire isn't fantastic but our family menu runs something like this during the week for main meals:

Roast chicken or lamb, with gluten-free gravy, roast potatoes, vegetables; risotto; shepherds pie, the sauce thickened with gluten-free flour; gluten-free pizza (shop bought); gluten-free meatballs with tomato and basil sauce, gluten-free pasta; gluten-free sausages and mashed potato; fish (coated in gluten-free batter) with gluten-free oven chipped potatoes; fish pie and vegetables...

For breakfast I have gluten-free toast or yoghurt and fruit; for lunch a sandwich made with gluten-free bread.

And yes... I do eat cheese, and love cheddar in particular, but my nutritionalist did warn me that sometimes gluten is used to create the blue marbling in blue cheeses so I don't eat that.  How true this is I have no idea!  I never liked it anyway!

Much of our family menu is standard pub British fayre for the most part, now I reflect on it!  I either make everything from scratch, replacing normal flour with gluten-free flour (Doves is a good brand)  or buy some ready made gluten free food from the supermarkets.  British product labelling has become very strict in recent years, thanks to Natascha's Law.   (This law has come about following the tragic death of Natascha Ednan-Laparouse who had an allergic reaction to sesame from a Pret bun).   There's a link to this below.  It should be a real-game changer.

So, at least with shops like Waitrose, Sainsbury's, Asda and M&S, if there is no mention of wheat, barley, rye or oats in the label, or "gluten", or "may contain traces of gluten" in the labelling, you can pretty much rely on it being safe.   To be absolutely sure, if you are in the UK long enough do join Coeliac UK as they have a food directory and an app which will really help you.

https://natashas-law.com/

 

 

Edited September 23, 2021 by cristiana

[cristiana]

Also, a lot of meat products are now gluten free in the main supermarkets so burgers, meat balls, sausages are often marked gluten free.  In fact, I just bought some turkey sausages which are labelled gluten free from Sainsburys today.

[Jackie Garrett]

51 minutes ago, cristiana said:

Also, a lot of meat products are now gluten free in the main supermarkets so burgers, meat balls, sausages are often marked gluten free.  In fact, I just bought some turkey sausages which are labelled gluten free from Sainsburys today.

Hello Sabaarya

With  me my problem was with Dairy, I know I am on A Celiac Forum, but it may be something that you haven’t considered or doubted, my story is in this site if you want to read it, as I am finding out more about things todo with health I believe too much histamine in our bodies maybe causing a lot of problems, I can’t have Dairy as it gives me quite a lot of symptoms some similar to yours, as we get older or maybe just having too much histamine in our bodies that the body cant cope with, is I believe when things start to go wrong, maybe you could try a low histamine diet and reducing your acid in take which includes many drinks and drink more water you don’t need to go overboard on water because that’s not good either you can get advice from a dietician about this, Dairy is in medication too, you can try an alternative if you ask, the body can become acidi, if our enzymes to break things down is malfunctioning we need to alkaline ourselves to heal and be well, I am  well now but I can not have Dairy, the tingling you are experiencing is probably inflammation in your body it’s reacting to what your eating/ drinking maybe by changing a few things might be all it takes to put things right but that very much includes what your drinking too ie,Tea, Coffee, Milk and alcohol anything acidic really, swap if for water and reduce the rest, I hope you get well it will take a while, but as we get older things change and we have to change with it, it’s very hard at first and you will fail sometimes but that doesn’t matter, just start again find other things that you like, I love Melon and Watermelon alkaline fruits, lots of veg, small portion of meat instead of larger, by keeping our portions smaller we a lowering extra histamine in our bodies, which I believe is a big trigger for inflammation and allergies and all sorts of Diseases, my opinion of course. Good luck.

Jackie

[Sabaarya]

3 hours ago, Jackie Garrett said:

Hello Sabaarya

With  me my problem was with Dairy, I know I am on A Celiac Forum, but it may be something that you haven’t considered or doubted, my story is in this site if you want to read it, as I am finding out more about things todo with health I believe too much histamine in our bodies maybe causing a lot of problems, I can’t have Dairy as it gives me quite a lot of symptoms some similar to yours, as we get older or maybe just having too much histamine in our bodies that the body cant cope with, is I believe when things start to go wrong, maybe you could try a low histamine diet and reducing your acid in take which includes many drinks and drink more water you don’t need to go overboard on water because that’s not good either you can get advice from a dietician about this, Dairy is in medication too, you can try an alternative if you ask, the body can become acidi, if our enzymes to break things down is malfunctioning we need to alkaline ourselves to heal and be well, I am  well now but I can not have Dairy, the tingling you are experiencing is probably inflammation in your body it’s reacting to what your eating/ drinking maybe by changing a few things might be all it takes to put things right but that very much includes what your drinking too ie,Tea, Coffee, Milk and alcohol anything acidic really, swap if for water and reduce the rest, I hope you get well it will take a while, but as we get older things change and we have to change with it, it’s very hard at first and you will fail sometimes but that doesn’t matter, just start again find other things that you like, I love Melon and Watermelon alkaline fruits, lots of veg, small portion of meat instead of larger, by keeping our portions smaller we a lowering extra histamine in our bodies, which I believe is a big trigger for inflammation and allergies and all sorts of Diseases, my opinion of course. Good luck.

Jackie

I really don’t know what’s wrong with me. My headaches not getting better. Do you tibia if iron supplements and vitamins may cause headaches? I’m so worried…

[Sabaarya]

19 hours ago, Wheatwacked said:

Yes, but I did not realize it was the magnesium until you mentioned it.

 

Pretty scary thought.

http://nutrientlog.doodlesnotes.net/  I have uploaded my food log with its nutrient values not including supplements, if you are interested.

Thank you. Today I’m having panic attacks. My headaches not getting any better. I was thinking maybe iron supplements give me that feeling. Would it be possible to get headaches from iron supplements and vitamins?

[Jackie Garrett]

38 minutes ago, Sabaarya said:

Thank you. Today I’m having panic attacks. My headaches not getting any better. I was thinking maybe iron supplements give me that feeling. Would it be possible to get headaches from iron supplements and vitamins?

They could contain lactose   and if  Dairy is your problem that could be adding to your levels, maybe start a food/ drink Diary and maybe avoid Gluten and Dairy and  maybe you will feel better, there are a lot of alternatives around now, or you could try avoiding one at a time but for quick results you may might have to avoid both for the time being and gradually try introducing one thing at a time and see how you react, remember though supplements will  more than likely have lactose in, if you Google all things that contain lactose in and that will be a lot of things, preservatives too, eat clean as you can prepare what you can, drink water it’s so important for our cells. I hope you get well soon

Jackie

[Wheatwacked]

On 9/21/2021 at 9:41 AM, Sabaarya said:

I also take antidepressants maybe those have hidden gluten as well..

Quote

 depression medication side effects can be physical symptoms like headache, joint pain, muscle aches, nausea, skin rashes, or diarrhea. ...The most common early side effects of theses meds were headache and nausea....   https://www.everydayhealth.com/depression/drug-side-effects.aspx

Seasonal Affective Disorder is blamed on less sunlight and shorter days. I had it for years, untreated. Sometimes I would cry at some cute TV commercial. It was year round but by September in NJ it got worse. There are all sorts of medical treatments, lightboxes, behavioral therapy and antidepressants but for some reason the doctors never make the connection to vitamin D. Nor the connection of vitamin D to depression in general!  It's my built in pessimission but could it be profit motive? Even though you are in LA you are D deficient. That is an imprortant discovery.  Saba, here is my advice: Talk to your doctor about changing your meds to something else. Even before doing that, increase your D from 22 (assuming ng/ml) to 70 quickly.  On the fourth day of taking 250 mcg I already felt like a cloud had lifted. I looked at the bottle of D and said "Sunshine in a bottle!" After 2 years my plasma level was still only 44.7.  It took another 4 years at 250 mcg (10,000 IU) a day to go from 44.7 ng/ml to 86.9.  This will help your depression, maybe you won't need the antidepressant and with luck some other symptoms may improve as well. As far as safety, there is lots of scary stuff about hypervitaminosis but they are talking about blood levels above 120 ng/ml. Normal range is 30-100. You are not even close to normal. "Taking 60,000 international units (IU) a day of vitamin D for several months has been shown to cause toxicity."   https://www.mayoclinic.org/healthy-lifestyle/nutrition-and-healthy-eating/expert-answers/vitamin-d-toxicity/faq-20058108.

A study was done on new kidney transplant patients. Some were given a single dose of 1,250,000 IU with no negative results.

Once your sense of hopelessness has lifted it will be easier to focus on your other symptoms.  When my infant son was sick, the doctors tried to blame it on my wifes anxiety and wanted her on Valium, It turned out to be he was a Celiac baby. The Stones called it mothers little helper, it is really doctors little helper. In 1995 after alcohol rehab they gave me Prozac, I couldn't even sit down for 4 hours from twitching. 20 years later I discovered my alcoholism went away with the GFD and vitamin D ended my depression. 

 

 

[cristiana]

Hello again!

I am not sure about iron supplements causing headaches but you could look at the possible side-effects listed on the pamphlet that accompanies the pills.

Another thought, however:  could gluten might be causing your headaches?   I believe earlier in your post you said at the moment you aren't entirely gluten free, because of your circumstances.  I got a lot of headaches during my "gluten trial" prior to being diagnosed.   I ate a lot of foods I knew I'd never be able to eat again because they contained gluten and paid for it with headaches.

Also, you are under a significant amount of stress - please don't underestimate how headache inducing that is.  Tension can cause awful headaches.

Have you been taking any tablets to relieve the pain?   UK pharmacists are very good at advising on which painkiller to take - do call in and ask their advice.

When I get tension headaches in my head and neck, I sleep with a rolled up towel under my neck which helps to realign my spine and that often helps a lot.

Make sure you are really well hydrated, too.  It's easy when we are anxious to forget to drink sometimes!

I hope your virtual visit to the doctors goes well.

Edited September 23, 2021 by cristiana

[Sabaarya]

45 minutes ago, Wheatwacked said:

Seasonal Affective Disorder is blamed on less sunlight and shorter days. I had it for years, untreated. Sometimes I would cry at some cute TV commercial. It was year round but by September in NJ it got worse. There are all sorts of medical treatments, lightboxes, behavioral therapy and antidepressants but for some reason the doctors never make the connection to vitamin D. Nor the connection of vitamin D to depression in general!  It's my built in pessimission but could it be profit motive? Even though you are in LA you are D deficient. That is an imprortant discovery.  Saba, here is my advice: Talk to your doctor about changing your meds to something else. Even before doing that, increase your D from 22 (assuming ng/ml) to 70 quickly.  On the fourth day of taking 250 mcg I already felt like a cloud had lifted. I looked at the bottle of D and said "Sunshine in a bottle!" After 2 years my plasma level was still only 44.7.  It took another 4 years at 250 mcg (10,000 IU) a day to go from 44.7 ng/ml to 86.9.  This will help your depression, maybe you won't need the antidepressant and with luck some other symptoms may improve as well. As far as safety, there is lots of scary stuff about hypervitaminosis but they are talking about blood levels above 120 ng/ml. Normal range is 30-100. You are not even close to normal. "Taking 60,000 international units (IU) a day of vitamin D for several months has been shown to cause toxicity."   https://www.mayoclinic.org/healthy-lifestyle/nutrition-and-healthy-eating/expert-answers/vitamin-d-toxicity/faq-20058108.

A study was done on new kidney transplant patients. Some were given a single dose of 1,250,000 IU with no negative results.

Once your sense of hopelessness has lifted it will be easier to focus on your other symptoms.  When my infant son was sick, the doctors tried to blame it on my wifes anxiety and wanted her on Valium, It turned out to be he was a Celiac baby. The Stones called it mothers little helper, it is really doctors little helper. In 1995 after alcohol rehab they gave me Prozac, I couldn't even sit down for 4 hours from twitching. 20 years later I discovered my alcoholism went away with the GFD and vitamin D ended my depression. 

 

 

Vitamin D is one of the most important vitamins. It helps with everything. Cancer ,immunity depression anxiety. My doctor always insisting on taking of vitamin D. Once he prescribed me 50,000 dose for once a week and I took it for once a month. It increased my vitamin D level and I was digesting that much better than daily 2000mg dose. I asked him to prescribe me that dose again but he refused to do that by explaining that he won’t be able to prescribe that dose again. I will ask the GP doctor tomorrow if he can. My anxiety is extremely affecting my life. I do have health anxiety and I need therapist,as friend of mine says. I bought zinc,magnesium and B complex today but I’m scared to take them. Too many medications. How is your son and wife now?

[Sabaarya]

42 minutes ago, cristiana said:

Hello again!

I am not sure about iron supplements causing headaches but you could look at the possible side-effects listed on the pamphlet that accompanies the pills.

Another thought, however:  could gluten might be causing your headaches?   I believe earlier in your post you said at the moment you aren't entirely gluten free, because of your circumstances.  I got a lot of headaches during my "gluten trial" prior to being diagnosed.   I ate a lot of foods I knew I'd never be able to eat again because they contained gluten and paid for it with headaches.

Also, you are under a significant amount of stress - please don't underestimate how headache inducing that is.  Tension can cause awful headaches.

Have you been taking any tablets to relieve the pain?   UK pharmacists are very good at advising on which painkiller to take - do call in and ask their advice.

When I get tension headaches in my head and neck, I sleep with a rolled up towel under my neck which helps to realign my spine and that often helps a lot.

Make sure you are really well hydrated, too.  It's easy when we are anxious to forget to drink sometimes!

I hope your virtual visit to the doctors goes well.

I don’t take any tablets for pain relief. I’ve never had persistent headaches before,occasional ,which would go away with a little bit of rest.  Will ask doctor tomorrow. Have you heard anything about private GP doctors? My sister’s friend gave me this website and I booked online appointment

https://www.londondoctorsclinic.co.uk/services/blood-tests/?infinity=ict2~net~gaw~ar~392170797985~kw~blood test in london~mt~e~cmp~378216999~ag~27373846119&gclid=CjwKCAjwj8eJBhA5EiwAg3z0m0aFN6VjdEaWyt_0jM3d5tI84A5QMLjNsQR1lJgR68pxdTB8yiIljRoCI0AQAvD_BwE

[Wheatwacked]

Thanks for asking. Kathy died Sept 18, 2005 on our 33rd anniverary. Ovarian Cancer.

Mike has been a profesional ocean lifeguard since high school.

i understand your reticence about too many meds. You doctor is right about the D. A shame you can't get the 50,000 a week dose, but by not taking 10,000 a day you are not punishing them. That's the depression talking.  Focus on one thing at a time. Your body is severely deficient in D. D has many positive effects. Fix it first see what improves, then pick the next sypmptom. Do your best to be gluten free. It will work out.  Don't wait. You have the official diagnosis(?) and that has advantages, but as you noted you already know more about it than your advisors. The wheels of beauracracy move slow, but don't let them stimey your own recovery because it's their job. It's not. Your doctor sees you, then the next patient becomes his/her priority until your next appointment. You are your priority 24/7.  It's hard, but ignore the negativities you run into about your food choices. They really don't understand and thats fine, because you do.

[Wheatwacked]

You were taking 50,000 a week and felt better, then dropped down to 14,000 a day. No wonder it wasn't helping. For me, 2000 did not help, 5000 did not help, It wasn't until I went to 10,000 a day that bam, sunshine in a bottle.

[cristiana]

8 hours ago, Sabaarya said:

I don’t take any tablets for pain relief. I’ve never had persistent headaches before,occasional ,which would go away with a little bit of rest.  Will ask doctor tomorrow. Have you heard anything about private GP doctors? My sister’s friend gave me this website and I booked online appointment

https://www.londondoctorsclinic.co.uk/services/blood-tests/?infinity=ict2~net~gaw~ar~392170797985~kw~blood test in london~mt~e~cmp~378216999~ag~27373846119&gclid=CjwKCAjwj8eJBhA5EiwAg3z0m0aFN6VjdEaWyt_0jM3d5tI84A5QMLjNsQR1lJgR68pxdTB8yiIljRoCI0AQAvD_BwE

Hello Sabaarya

I'm afraid I don't, because I've only ever used NHS (the state) GP service. 

Visitors to the country can use this state care.  Please read this link - I know people must be sending you info left right and centre, but make sure you find out what is available to you through the NHS first.

https://www.nhs.uk/nhs-services/visiting-or-moving-to-england/how-to-access-nhs-services-in-england-if-you-are-visiting-from-abroad/

I do use private health once I have been referred on by my GP and the hospital I go to is part of Nuffield Health.  This is a very reputable organisation.

It appears they too have a GP service. 

https://www.nuffieldhealth.com/hospitals/private-gp-service

Costs can mount up quite quickly so try to find out how much you will need to pay before each appointment.   Do you have travel insurance?   If so, ask them if you can use it.   

Cristiana 

 

Edited September 24, 2021 by cristiana

[Sabaarya]

9 hours ago, Wheatwacked said:

Thanks for asking. Kathy died Sept 18, 2005 on our 33rd anniverary. Ovarian Cancer.

Mike has been a profesional ocean lifeguard since high school.

i understand your reticence about too many meds. You doctor is right about the D. A shame you can't get the 50,000 a week dose, but by not taking 10,000 a day you are not punishing them. That's the depression talking.  Focus on one thing at a time. Your body is severely deficient in D. D has many positive effects. Fix it first see what improves, then pick the next sypmptom. Do your best to be gluten free. It will work out.  Don't wait. You have the official diagnosis(?) and that has advantages, but as you noted you already know more about it than your advisors. The wheels of beauracracy move slow, but don't let them stimey your own recovery because it's their job. It's not. Your doctor sees you, then the next patient becomes his/her priority until your next appointment. You are your priority 24/7.  It's hard, but ignore the negativities you run into about your food choices. They really don't understand and thats fine, because you do.

So sorry for you wife:(.. I will get high dose vitamin D

[notme]

On 9/20/2021 at 6:01 PM, Sabaarya said:

Hi. As much as I google about celiac it scares me even more. Panicking a lot about other conditions that it can cause. Read something about refractory celiac disease and literally start crying. Does anyone feels better and have good life quality for a long time after gluten-free diet. How long does it take to feel improvement. My symptoms are mostly hand tingling,headaches and iron deficiency and I have mild atrophy in my duodenum:((

hello!  ok, let's not borrow trouble   your celiac diagnosis is a blessing in disguise.  it will save you from developing so many other (worse!) conditions just by switching your diet.  no, most dieticians and doctors do not know a whole lot about celiac - in my opinion, you will get the best advice right here.  so, calm down (you sound exactly like my daughter - she had the same anxiety, hand tingling, etc - she had a prescription for xanax in the beginning of her gluten-free journey, now she only takes it now and again when she has stressful days) 

i am also the family hypochondriac, lolz, but so is my brother - always running to the doc and tests come back negative - until my celiac diagnosis.  then all the pieces of the puzzle fell into place.  because it is a genetic thing, chances are that at least one of your other close relatives also have celiac, they just don't know it.  in my immediate family, it is me, my brother, my daughter and my son.  but also, my cousin and my nephew and probably my sister but she is in denial.  so, your family would be wise to help you along, and pay attention to take your diagnosis seriously!!  they might be in the same boat!!  they wouldn't chide you for having a heart attack, now, would they?  of course not!  and this is (because you need nutrition and to EAT to LIVE) just as serious.   the sooner you clean up your diet (i know, i know) and get strictly gluten free, you will break the cycle of inflammation.  feel free to grieve the foods you will no longer be able to eat, we've all been through it.  crying over pizza is a sad, sad thing, but you'll find other favorites that won't bite ya back.

go to the 'coping' section of this forum and there is a pinned thread called 'newbie 101' - there are a lot of guidelines, tips and advice there.   i promise you, once you get a hold of your situation, you're gonna feel great, and probably 10 years younger lolz - i know i do!!  

there are plenty of things you can eat, i would suggest keeping a food journal to see what you can eat comfortably.  some people go through withdrawal in the beginning, some don't.  naps and snacks are your friend.  in my 11 years on this diet, there have been so many new, gluten free products.  the bread choices have been much improved!  you can eat 'clean' - meat, potatoes, veggie, fruits, nuts, etc.  once your gut starts healing, you're going to absorb all those vitamins and nutrients and stuff is going to start healing and working the way it's supposed to.  including nerves, although they do take their sweet time to heal  i'm still a little high strung lolz  

you are in a good place right here.  i would venture to say that you have a good collection of amateur experts on this forum.  ask any questions you like, i guarantee we've probably heard it!

welcome to the club you never wanted to join.  you're gonna be great.

[Wheatwacked]

This might explain why my Celiac son, who has spent his entire life in the sun can be not GFD withour triggering an obvious response. Also why with my vitamin D level at 85 ng/ml I no longer react to occasional contamination as I did two years ago. Not an excuse to eat wheat, though, but I don't react the way I used to in 2014. Any one else notice this?

Quote

Nutrients

v.12(4); 2020 Apr

PMC7231074

The new emerging role of vitamin D and its involvement in immune modulation has led it to be considered as a possible key factor involved in celiac disease (celiac disease) onset.  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7231074/

Quote

They confirmed these findings by performing an in vivo study using gluten-sensitized mice. The mice were sensitized with PT–G (pepsin–trypsin-resistant gliadin) for 30 consecutive days, which resulted in significant increases in small intestinal permeability, significant decreases in TJ protein expression  [Tight junctions (TJs) are the major junctions responsible for intestinal mucosa barrier regulation.} and MyD88-dependent zonulin release signaling pathway activation. A vitamin D3 oral treatment for 7 days attenuated these changes, confirming in vivo the protective role of vitamin D against PT–G-induced intestinal mucosal barrier injuries.   https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7231074/

 

 

 

[knitty kitty]

21 hours ago, Wheatwacked said:

This might explain why my Celiac son, who has spent his entire life in the sun can be not GFD withour triggering an obvious response. Also why with my vitamin D level at 85 ng/ml I no longer react to occasional contamination as I did two years ago. Not an excuse to eat wheat, though, but I don't react the way I used to in 2014. Any one else notice this?

 

 

 

Me!  I'm a big fan of Vitamin D level up in the 80's!  My reaction to gluten is much less severe when gluten contaminated.  I just plain old feel better, too!

[notme]

me, too!  my body is like:  nope, it gets rid of the gluten (noticed this when i ate tortilla chips before confirming that they were fried in a dedicated fryer - they weren't !!  )  so, i know i got glutened.  but i didn't have the 14 day reaction that i used to have