Extremely anxious

[Sabaarya]

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:((

[GodsGal]

3 hours ago, 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:((

Hi Sabaarya,

Anxiety is pretty common. Especially in the beginning. There is a lot to learn, and it's pretty overwhelming. Many people live long, healthy lives after going gluten free. I am only about 18 months into my diagnosis. So I am still in the healing stages. How long have you been gluten free?

My understanding is that it takes an average of 2 years for the villi to heal. My symptoms started disappearing within the first several months. It also takes time for the antibodies to drop back into the normal range. 

Take a deep breath, my friend. You can do this. You've got a whole community here with you.

 

[Sabaarya]

Thank you for reply. It’s been almost a month. But I’m not sure if I’m doing it right. Have a dietitian appointment tomorrow. My antibodies were normal. I haven’t eaten normal before blood test,was very anxious,so doctor not sure if it was correct. Anyways he said positive biopsy and genetic panel consistent with celiac disease. Doctor said 3 months strict gluten-free diet and repeat biopsy..What was your symptoms?

 

[GodsGal]

8 hours ago, Sabaarya said:

Thank you for reply. It’s been almost a month. But I’m not sure if I’m doing it right. Have a dietitian appointment tomorrow. My antibodies were normal. I haven’t eaten normal before blood test,was very anxious,so doctor not sure if it was correct. Anyways he said positive biopsy and genetic panel consistent with celiac disease. Doctor said 3 months strict gluten-free diet and repeat biopsy..What was your symptoms?

 

My symptoms were more GI related and a rash on the back of my hands. I was having upper right abdominal pain, bloating, foul smelling bowel movements, and food intolerances. But, for me, I didn't suspect celiac at all. Other than the abdominal pain, I thought that all of the other symptoms were "normal for me". So it was a shock when I got diagnosed. 

Are you still eating dairy products and oats? Many people with celiac have to give those up for awhile. Sometimes we can add them back in. Other times, we can't.

I would recommend that you check for gluten in things like medications, pet food, cosmetics, hygiene products, detergents, and toothpaste. And don't forget to change your toothbrush.

Also, if you share a kitchen with people who are not gluten free, then you need to have your own utensils, dishes, dishrags, dishtowels, and toaster. And they should be stored separately to avoid cross contamination.

I am honestly surprised that the doctor wants to repeat the biopsy so soon. It doesn't give much time for healing to have occurred.

I know that you are feeling anxious about refractory celiac disease and such. I am not a medical professional, so I could be wrong. But, I don't think that is diagnosed until a year or so with no change on the gluten free diet. I would suggest that at this point you just focus on going gluten free. Yes, it is important to know the risks you face. But at this stage, the learning curve you are facing is big enough that I don't think I would add any additional stress. 

I hope this helps! Keep me posted.

 

[Sabaarya]

Thank you so much:)

i did have your symptoms as well but I was related all of that to my gastrities. Since I started gluten-free diet I feel like my GI symptoms got better,but I guess I’m not strict gluten-free. I’m in London right now,visiting my family and all of them kind of not taking my disease serious. Since I was hypochondriac all my life and having check ups and doc. appointments all the time with good results always,so they think this time it’s again my imagination,or they say common doctor said your disease is minimal and mild you don’t need to be so picky :(. And my sis friends inviting us over for dinner or lunch I feel kind of not ok to explain everyone why I can’t eat your food or I’m sorry. And I’m in my sis house,everyone using the same kitchen. She buys everything gluten free for me but again I need to organize everything. Tomorrow I do have dietitian appointment and will ask everything in details. And yes I still have dairy products like goat cheese and yogurt. And about my biopsy I guess since my antibody tests were normal he probably wants to see if there is gonna be any changes on diet. I don’t know…

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

[GodsGal]

3 hours ago, Sabaarya said:

Thank you so much:)

i did have your symptoms as well but I was related all of that to my gastrities. Since I started gluten-free diet I feel like my GI symptoms got better,but I guess I’m not strict gluten-free. I’m in London right now,visiting my family and all of them kind of not taking my disease serious. Since I was hypochondriac all my life and having check ups and doc. appointments all the time with good results always,so they think this time it’s again my imagination,or they say common doctor said your disease is minimal and mild you don’t need to be so picky :(. And my sis friends inviting us over for dinner or lunch I feel kind of not ok to explain everyone why I can’t eat your food or I’m sorry. And I’m in my sis house,everyone using the same kitchen. She buys everything gluten free for me but again I need to organize everything. Tomorrow I do have dietitian appointment and will ask everything in details. And yes I still have dairy products like goat cheese and yogurt. And about my biopsy I guess since my antibody tests were normal he probably wants to see if there is gonna be any changes on diet. I don’t know…

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

I get it. My symptoms were not noticeable to other people. I was asleep when they did the endoscopy. So I never actually talked to the doctor who did the test. He just told my mom that everything looked ok. So, when the results came back from the lab, and I definitely had celiac, there was quite a bit of denial. On several occasions I heard, "The doctor said it looked good. Could they have made a mistake in the lab?" 😟 But they have come around now. 

I take my own food when I go places. If I am taking something to share, then I get things that are prepackaged in single serving sized packages, wrap mine up separately, or take it in individual portions. If I am invited over to someone's house, then I will let them know what restrictions I have, and ask if it is ok to bring my own food. If I am going to a restaurant, then I talk to the chef, or call and ask if I can bring my own food. 

[cristiana]

Hi Sabaarya

If you are in London, that means  you are only about 50 miles away from me as I type this! ☺️

I had a rocky start to my gluten-free journey.

About ten days after my biopsy, having been inexplicably poorly for a long time, I met with my gastroenterologist and  I remember telling him I was about to go to France for a couple of weeks, and I was wondering how I would get on with the gluten-free diet.

He told me there and then... "Ah.... don't worry about starting your gluten free diet until you come back."  I thought it was odd advice but I think what he meant was I was going to find it very difficult to make a start with a gluten free diet under such circumstances i.e. not doing my own cooking, in a foreign country, etc etc.

Anyway, I decided I would try my best and I googled a coeliac society in France for some tips.  I don't remember much about the website other than the home page, which featured a long ranting lecture on how a lot of French people were in denial over coeliac disease and how important it was to give up baguettes and take the diet seriously...   There wasn't much help, just a lecture.

Not put off by this, I decided I would try to start my diet once in Normandy.   I speak reasonable French  so tried to tell everyone my dietary needs and yet no-one seemed to get it.   I remember being served an omelette that clearly had flour in it.  I remember another occasion standing outside an outdoor cafe in the queue behind a British coeliac, who was brandishing a laminated card with the words, "Je suis coeliaque"  and an explanation about what she could and couldn't eat, and it seemed to go completely over the head of the man behind the counter. 

It was a lovely holiday but I remember my hand, arm and leg tingling got even worse while I was there as obviously my dining experience was very far from gluten-free, and I wondered at the time if I was getting something far worse than coeliac disease.

Anyway, once back at home I started to find my way again.   Slowly but surely I found my feet.

It has taken a long time for my numbers to come down and they are still too high for my liking, but my biopsies are now normal.   I have had some weird and wonderful symptoms over the years some of which I put down to late diagnosis and nutritional deficiencies.  But I am far better than I was back in 2013 and am so grateful that they discovered what was wrong with me. 

You are just at the beginning of a journey.  It is natural to fear the worst, but the overwhelming majority of coeliacs do respond to a gluten free diet.  

It must be incredibly difficult for you to start a gluten-free diet just now, and  trying to explain your situation to your family.  Even I would find it hard, as a seasoned veteran of many campaigns (i.e. trying to get people to understand campaigns).

I don't know how long you are in the UK but you might wish to join the Coeliac UK charity now as they can send you lots of helpful info, as well as giving you access to an app which will tell you if a product you are buying is gluten-free or not.  

https://www.coeliac.org.uk/home/

 Take care, and try not to worry - things will get easier!

Edited September 21, 2021 by cristiana

[cristiana]

PS   I am labelled the family hypochondriac, so I really understand how that feels.  But then undiagnosed coeliac disease has thrown so many weird and wonderful symptoms my way that I think anyone else would have been the same.   

My grandmother had five medical dictionaries in an era before Dr Google.  Before my time, she was considered the family hypochondriac.  I, on the hand, believe she was more than likely an undiagnosed coeliac. 

Edited September 21, 2021 by cristiana

[Sabaarya]

3 hours ago, GodsGal said:

I get it. My symptoms were not noticeable to other people. I was asleep when they did the endoscopy. So I never actually talked to the doctor who did the test. He just told my mom that everything looked ok. So, when the results came back from the lab, and I definitely had celiac, there was quite a bit of denial. On several occasions I heard, "The doctor said it looked good. Could they have made a mistake in the lab?" 😟 But they have come around now. 

I take my own food when I go places. If I am taking something to share, then I get things that are prepackaged in single serving sized packages, wrap mine up separately, or take it in individual portions. If I am invited over to someone's house, then I will let them know what restrictions I have, and ask if it is ok to bring my own food. If I am going to a restaurant, then I talk to the chef, or call and ask if I can bring my own food. 

I was concerned about my iron deficiency and asked my doctor to check for stool occult blood and it came back positive. Got really scared because of cancer,so after endoscopy and colonoscopy doctor said no cancer,you have gastritis and couple of red spots in your small intestine,he said you probably ate something that irritated your small intestine. After  3 days he emailed me that results came back nothing serious to worry about and that he wants to follow up before I leave to London. I knew already there is something because at my last endoscopy in 2013 doctor just called me and said biopsy results are back and everything is fine just chronic gastritis. First thing doctor asked at the follow up appointment was what’s your background and I was like why? Is there anything serious . I said I’m persian ,he said it’s so interesting because celiac disease it’s white and European people disease. I knew already about celiac because before colonoscopy I was looking for occult blood causes in stool,but I didn’t know that there is no cure besides diet. He said it’s Marsh 3a and mild. And he glad that we found out the reason of iron defficiency.But after my antibody test came back negative I was freaked out again because again I was looking for other causes of villi damage,bunch of scary diseases. Then my genetic panel came back positive with celiac variants and he said so there is pathologist report and genetic panel consistent with celiac disease. For the past 6 months I’ve been having muscle pains,back pain,headaches on and off  hand tingling,I was not feeling well in general,but I was thinking it’s because my mom’s cancer diagnose stress. It was the biggest shock in my life . I had the worst 3 months in my life when we found out that my mom has stage 4 breast cancer:(. I was hospitalized due to shock and stress. Oh that was so bad. Thank God she was in US with me and she has access to medical and new treatments,she is under control now. All her blood work and check ups were perfectly normal even cancer markers were normal. It was so unexpected. Anyways I’ve been having such a rough year. Hopefully my duodenum will heal by the next endoscopy which in 3 months.

thank you so much:)

[Sabaarya]

2 hours ago, cristiana said:

Hi Sabaarya

If you are in London, that means  you are only about 50 miles away from me as I type this! ☺️

I had a rocky start to my gluten-free journey.

About ten days after my biopsy, having been inexplicably poorly for a long time, I met with my gastroenterologist and  I remember telling him I was about to go to France for a couple of weeks, and I was wondering how I would get on with the gluten-free diet.

He told me there and then... "Ah.... don't worry about starting your gluten free diet until you come back."  I thought it was odd advice but I think what he meant was I was going to find it very difficult to make a start with a gluten free diet under such circumstances i.e. not doing my own cooking, in a foreign country, etc etc.

Anyway, I decided I would try my best and I googled a coeliac society in France for some tips.  I don't remember much about the website other than the home page, which featured a long ranting lecture on how a lot of French people were in denial over coeliac disease and how important it was to give up baguettes and take the diet seriously...   There wasn't much help, just a lecture.

Not put off by this, I decided I would try to start my diet once in Normandy.   I speak reasonable French  so tried to tell everyone my dietary needs and yet no-one seemed to get it.   I remember being served an omelette that clearly had flour in it.  I remember another occasion standing outside an outdoor cafe in the queue behind a British coeliac, who was brandishing a laminated card with the words, "Je suis coeliaque"  and an explanation about what she could and couldn't eat, and it seemed to go completely over the head of the man behind the counter. 

It was a lovely holiday but I remember my hand, arm and leg tingling got even worse while I was there as obviously my dining experience was very far from gluten-free, and I wondered at the time if I was getting something far worse than coeliac disease.

Anyway, once back at home I started to find my way again.   Slowly but surely I found my feet.

It has taken a long time for my numbers to come down and they are still too high for my liking, but my biopsies are now normal.   I have had some weird and wonderful symptoms over the years some of which I put down to late diagnosis and nutritional deficiencies.  But I am far better than I was back in 2013 and am so grateful that they discovered what was wrong with me. 

You are just at the beginning of a journey.  It is natural to fear the worst, but the overwhelming majority of coeliacs do respond to a gluten free diet.  

It must be incredibly difficult for you to start a gluten-free diet just now, and  trying to explain your situation to your family.  Even I would find it hard, as a seasoned veteran of many campaigns (i.e. trying to get people to understand campaigns).

I don't know how long you are in the UK but you might wish to join the Coeliac UK charity now as they can send you lots of helpful info, as well as giving you access to an app which will tell you if a product you are buying is gluten-free or not.  

https://www.coeliac.org.uk/home/

 Take care, and try not to worry - things will get easier!

Thank you so much:)

I will be here until the end of November. We’ve decided to have family reunion and spend time together after my mom’s breast cancer diagnose. I was so happy after her last scan that showed improvement and ready to come to London and then boom my diagnose. So I’m kind of ruining all the plans that we had,because I’m constantly anxious,worried. Poor my mom she has stage 4 breast cancer and she’s such a strong woman. I was going through so much stress. All her check ups,doctor appointments scans blood work. It was all on me. And every scan,blood work doc appointment was so stressful, I was feeling like I’m gonna pass out due the amount of the stress. So I was not feeling well and related my symptoms to stress. But it’s been 6 months now that I don’t feel well. Muscle pain,back pain,headaches,ear pressure and tingling. Doctor said Marsh 3a score it’s mild damage and it’s minimal. I don’t understand the symptoms then and why my antibody was normal. 
what was your symptoms and how long did it take to see improvements ?

[Ivana]

On 9/21/2021 at 12:01 AM, 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,

I was the same as you a year ago when I got diagnosed. I was so afraid that having celiac meant a host of bad diseases down the line and the anxiety that this feeling caused is what actually made my body feel sick and uncomfortable, not the celiac itself. Now a year down the road I am not really afraid anymore. My antibodies are down, iron is up, I am still here just as I was a year ago, and I would say still overall healthy (as I always thought myself to be, except for anemia). However,  I am still trying to recover from the stres response to the diagnosis (in the form of muscle tension) as my brain still needs to relearn to relax after everything. Please don't stress yourself so much about this, as stress can hurt your wellbeing too. You will get a hang of the gluten free diet, you will get used to this new normal for you, and you will see that you can still continue living a healthy life. Do what you can to keep yourself gluten free and healthy and don't worry about the rest. No one can tell what lies ahead for them, celiac or not. Also, after you educate yourself enough about gluten free life, I would advise you to stop googling, or even spending too much time on celiac forums. Occupy yourself with other things and don't let thoughts of celiac take over. In the long run, even if you don't see it that way yet, it is just a diet adjustement, that's all. Best wishes!

[Ivana]

3 minutes ago, Ivana said:

Hello,

I was the same as you a year ago when I got diagnosed. I was so afraid that having celiac meant a host of bad diseases down the line and the anxiety that this feeling caused is what actually made my body feel sick and uncomfortable, not the celiac itself. Now a year down the road I am not really afraid anymore. My antibodies are down, iron is up, I am still here just as I was a year ago, and I would say still overall healthy (as I always thought myself to be, except for anemia). However,  I am still trying to recover from the stres response to the diagnosis (in the form of muscle tension) as my brain still needs to relearn to relax after everything. Please don't stress yourself so much about this, as stress can hurt your wellbeing too. You will get a hang of the gluten free diet, you will get used to this new normal for you, and you will see that you can still continue living a healthy life. Do what you can to keep yourself gluten free and healthy and don't worry about the rest. No one can tell what lies ahead for them, celiac or not. Also, after you educate yourself enough about gluten free life, I would advise you to stop googling, or even spending too much time on celiac forums. Occupy yourself with other things and don't let thoughts of celiac take over. In the long run, even if you don't see it that way yet, it is just a diet adjustement, that's all. Best wishes!

Oh, I read your other replies in this thread, and I do think that your symptoms are also  stress related. Even though you feel relieved now that your Mom's tests are coming back normal, from what you describe it is obvious that you were under tremendous amount of stress, and such things take time to subside, even once you feel "fine" again. Also, the celiac diagnosis seems to be giving you new stress now so your symptoms continue. I myself was anemic for maybe 20 years, and I think I had celiac for that long or even longer. I never had any muscle problems, or any kind of other aches and pains. I actually always felt pretty great physically. But three days after I was told that I had celiac and when I started reading and panicking about it, muscle tension started, twitching, pins and needles...  then these new symptoms gave me stress and worry so the vicious circle continued. I am still experiencing upper body tension (front and back), but I also have other non health related stresses in my life which I think make me unable to relax. Once your nerves go in overdrive, it takes a long time for them to get back to the baseline, it seems, and even little stress that you could handle before, now keeps you in this tense state.  

[cristiana]

57 minutes ago, Sabaarya said:

Thank you so much:)

I will be here until the end of November. We’ve decided to have family reunion and spend time together after my mom’s breast cancer diagnose. I was so happy after her last scan that showed improvement and ready to come to London and then boom my diagnose. So I’m kind of ruining all the plans that we had,because I’m constantly anxious,worried. Poor my mom she has stage 4 breast cancer and she’s such a strong woman. I was going through so much stress. All her check ups,doctor appointments scans blood work. It was all on me. And every scan,blood work doc appointment was so stressful, I was feeling like I’m gonna pass out due the amount of the stress. So I was not feeling well and related my symptoms to stress. But it’s been 6 months now that I don’t feel well. Muscle pain,back pain,headaches,ear pressure and tingling. Doctor said Marsh 3a score it’s mild damage and it’s minimal. I don’t understand the symptoms then and why my antibody was normal. 
what was your symptoms and how long did it take to see improvements ?

Hello again Sabaarya.

A small number of coeliacs can have damage in their gut but have absolutely normal blood tests.  That is why it is so important for people with symptoms to have an endoscopy, as often that is they only way they can be sure that they are coeliacs.

Your symptoms are so incredibly close to mine - anemia, muscle pain, back pain, migraines, tinnitus (if that's what you mean by ear pressure) and tingling.  I wish I could say to you that if you follow a gluten free diet, you will feel 100 per cent better in a week - but it's not like that.  Your body will need time to heal, sometimes it takes a few months, for others, it takes longer.  And in this time, whilst staying off gluten, and you will also need to make sure you are addressing any vitamin and mineral deficiencies.  It may seem a lot to cope with but try to take one day at a time.   You will begin to see improvements gradually. Don't look too far ahead.  (I now know why in English a patient is the same word as being patient!)

Like you, I also had blood in my stool.   But in fact in my case the toilet bowl was bright red.  It turns out had fissures caused by extreme diarrhea which in part was caused by taking very strong iron tablets.  When I lessened the dose, my diarrhea improved greatly and the bleeding stopped. 

Also like you, I had crushing anxiety - in fact, it was such an alien feeling that it took me lots of googling to actually understand what it was.  You do have a lot on your plate at the moment and I'm sorry to hear about what you have had to go through with your mom.  This would be a lot for anyone and would make anyone anxious.  But bear in mind you well have additional anxiety caused by coeliac disease itself and a gluten free diet will help.  Your anemia can also be making you feel on edge.  And I can't stress this enough, see if your B12 levels are low or even low normal - I felt a huge improvement in my anxiety after taking B12 sublingual supplements.  Some people even need injections - something to talk to your doctor about.

Regarding anxiety,  I found a couple of books online that really helped me deal with my anxiety.  Google them and see what you think. They were very empowering.  (At Last a Life by Paul David, and Dr Steve Llardi's The Depression Cure: Six Step Program to beat Depression without Drugs).  I also found a lot of help in going for long walks and spending time in prayer.

Anyway, I'm sorry, this is a bit of a ramble, it's a bit late, but I hope some of it helps.

My husband is currently in London BTW!

 

Edited September 21, 2021 by cristiana

[Sabaarya]

26 minutes ago, Ivana said:

Hello,

I was the same as you a year ago when I got diagnosed. I was so afraid that having celiac meant a host of bad diseases down the line and the anxiety that this feeling caused is what actually made my body feel sick and uncomfortable, not the celiac itself. Now a year down the road I am not really afraid anymore. My antibodies are down, iron is up, I am still here just as I was a year ago, and I would say still overall healthy (as I always thought myself to be, except for anemia). However,  I am still trying to recover from the stres response to the diagnosis (in the form of muscle tension) as my brain still needs to relearn to relax after everything. Please don't stress yourself so much about this, as stress can hurt your wellbeing too. You will get a hang of the gluten free diet, you will get used to this new normal for you, and you will see that you can still continue living a healthy life. Do what you can to keep yourself gluten free and healthy and don't worry about the rest. No one can tell what lies ahead for them, celiac or not. Also, after you educate yourself enough about gluten free life, I would advise you to stop googling, or even spending too much time on celiac forums. Occupy yourself with other things and don't let thoughts of celiac take over. In the long run, even if you don't see it that way yet, it is just a diet adjustement, that's all. Best wishes!

Thank you so much 🙏❤️

[Sabaarya]

11 minutes ago, cristiana said:

Hello again Sabaarya.

A small number of coeliacs can have damage in their gut but have absolutely normal blood tests.  That is why it is so important for people with symptoms to have an endoscopy, as often that is they only way they can be sure that they are coeliacs.

Your symptoms are so incredibly close to mine - anemia, muscle pain, back pain, migraines, tinnitus (if that's what you mean by ear pressure) and tingling.  I wish I could say to you that if you follow a gluten free diet, you will feel 100 per cent better in a week - but it's not like that.  Your body will need time to heal, sometimes it takes a few months, for others, it takes longer.  And in this time, whilst staying off gluten, and you will also need to make sure you are addressing any vitamin and mineral deficiencies.  It may seem a lot to cope with but try to take one day at a time.   Don't look too far ahead.  

Like you, I also had blood in my stool.   But in fact in my case the toilet bowl was bright red.  It turns out had fissures caused by extreme diarrhea which in part was caused by taking very strong iron tablets.  When I lessened the dose, my diarrhea improved greatly and the bleeding stopped. 

Also like you, I had crushing anxiety - in fact, it was such an alien feeling that it took me lots of googling to actually understand what it was.  You do have a lot on your plate at the moment and I'm sorry to hear about what you have had to go through with your mom.  This would be a lot for anyone and would make anyone anxious.  But bear in mind you well have additional anxiety caused by coeliac disease itself and a gluten free diet will help.  Your anemia can also be making you feel on edge.  And I can't stress this enough, see if your B12 levels are low - I felt a huge improvement after taking B12 sublingual supplements.  Some people even need injections - something to talk to your doctor about.

Regarding anxiety,  I found a couple of books online that really helped me deal with my anxiety.  Google them and see what you think. They were very empowering.  (At Last a Life by Paul David, and Dr Steve Llardi's The Depression Cure: Six Step Program to beat Depression without Drugs).  I also found a lot of help in going for long walks and spending time in prayer.

Anyway, I'm sorry, this is a bit of a ramble, but I hope some of it helps.

My husband is currently in London BTW!

 

Thank you so much Cristiana, I feel better after your replies🙏😍. Do you live in England. I’ve been living in LA for 10 years now,but I like London more:)…

[Sabaarya]

Just now, Sabaarya said:

Thank you so much Cristiana, I feel better after your replies🙏😍. Do you live in England. I’ve been living in LA for 10 years now,but I like London more:)…I’m Saba and Arya is my son:). I’m 39. We were planning for 2nd baby,don’t now if gonna be able to do it with my new diagnose:))

[Sabaarya]

20 minutes ago, Ivana said:

Oh, I read your other replies in this thread, and I do think that your symptoms are also  stress related. Even though you feel relieved now that your Mom's tests are coming back normal, from what you describe it is obvious that you were under tremendous amount of stress, and such things take time to subside, even once you feel "fine" again. Also, the celiac diagnosis seems to be giving you new stress now so your symptoms continue. I myself was anemic for maybe 20 years, and I think I had celiac for that long or even longer. I never had any muscle problems, or any kind of other aches and pains. I actually always felt pretty great physically. But three days after I was told that I had celiac and when I started reading and panicking about it, muscle tension started, twitching, pins and needles...  then these new symptoms gave me stress and worry so the vicious circle continued. I am still experiencing upper body tension (front and back), but I also have other non health related stresses in my life which I think make me unable to relax. Once your nerves go in overdrive, it takes a long time for them to get back to the baseline, it seems, and even little stress that you could handle before, now keeps you in this tense state.  

🙏🙏❤️❤️

[Ivana]

14 minutes ago, Sabaarya said:

17 minutes ago, Sabaarya said:

Thank you so much Cristiana, I feel better after your replies🙏😍. Do you live in England. I’ve been living in LA for 10 years now,but I like London more:)…I’m Saba and Arya is my son:). I’m 39. We were planning for 2nd baby,don’t now if gonna be able to do it with my new diagnose:))

Saba, I was 39 when diagnosed too

[cristiana]

13 minutes ago, Sabaarya said:

16 minutes ago, Sabaarya said:

Thank you so much Cristiana, I feel better after your replies🙏😍. Do you live in England. I’ve been living in LA for 10 years now,but I like London more:)…I’m Saba and Arya is my son:). I’m 39. We were planning for 2nd baby,don’t now if gonna be able to do it with my new diagnose:))

I'm so glad I've been able to help a little.

Yes, I live in England but I am what they call a "Country Mouse" so only go to London if I absolutely must. 

I don't know if you are familiar with the story of the Town Mouse and the Country Mouse. I think it might be an Aesop's fable? The story goes that the two mice visit each other's homes but the Country Mouse finds city life too busy, and the Town Mouse finds life in the country too dull.  Beatrix Potter wrote a lovely illustrated version of this story "The Tale of Johnny Town Mouse".   I rediscovered it last year, I think, during one of the lockdowns.   Absolutely delightful.  Details below...

Anyway, I'm so glad you like London!

xx

https://en.wikipedia.org/wiki/The_Tale_of_Johnny_Town-Mouse

[cristiana]

 

We were planning for 2nd baby,don’t now if gonna be able to do it with my new diagnose:))

 I had a friend who had several miscarriages and a miracle baby who was born very early.  She was then diagnosed with coeliac disease, started the gluten-free diet, and from then on she went to have two babies without any further problems.  xx

[Wheatwacked]

23 hours ago, Sabaarya said:

I was hypochondriac all my life and having check ups and doc. appointments all the time with good results always,so they think this time it’s again my imagination,

This seems to be a common story with Celiac Disease.  Around 65% of celiacs are vitamin D deficient. Researchers have found that vitamim D deficiency is also found in depression, bone health, heart disease, cancer, and more; although they always point out that D may not be the cause.

Dietary Lithium deficiency has been linked to anxiety also.   https://ndnr.com/anxietydepressionmental-health/low-dose-lithium-an-effective-treatment-for-mood-disorders/

I take 250 mcg vitamin D3 and 5 mg Lithium daily for six years now, and it has changed my life.

There are other vitamins  (all the B's, zinc, choline, etc) caused by malabsorption syndrome from celiac disease that will affect how quickly your body will heal, but these two had the greatest effect on my mental health.

Quote

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

Vitamin D deficiency is an increasingly described phenomenon worldwide [1]. Compelling evidence from human disease associations and basic physiological studies demonstrated the significance of vitamin D deficiency in various physiological disorders including neuropathy [2], malignancy [3, 4], infertility [5], cardiovascular diseases [6, 7], kidney diseases [8], glucose metabolism [9], and immunological dysfunctions   https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6047889/

 

[Sabaarya]

16 hours ago, cristiana said:

I'm so glad I've been able to help a little.

Yes, I live in England but I am what they call a "Country Mouse" so only go to London if I absolutely must. 

I don't know if you are familiar with the story of the Town Mouse and the Country Mouse. I think it might be an Aesop's fable? The story goes that the two mice visit each other's homes but the Country Mouse finds city life too busy, and the Town Mouse finds life in the country too dull.  Beatrix Potter wrote a lovely illustrated version of this story "The Tale of Johnny Town Mouse".   I rediscovered it last year, I think, during one of the lockdowns.   Absolutely delightful.  Details below...

Anyway, I'm so glad you like London!

xx

https://en.wikipedia.org/wiki/The_Tale_of_Johnny_Town-Mouse

Interesting :).

Cristiana,how long did it take for your tingling and iron deficiency to get better. My hemoglobin was 11.5,not so bad but ferritin is extremely low 3.9,so I do take iron supplement only once a day,otherwise it would cause very bad upset stomach for me…

[Sabaarya]

1 hour ago, Wheatwacked said:

This seems to be a common story with Celiac Disease.  Around 65% of celiacs are vitamin D deficient. Researchers have found that vitamim D deficiency is also found in depression, bone health, heart disease, cancer, and more; although they always point out that D may not be the cause.

Dietary Lithium deficiency has been linked to anxiety also.   https://ndnr.com/anxietydepressionmental-health/low-dose-lithium-an-effective-treatment-for-mood-disorders/

I take 250 mcg vitamin D3 and 5 mg Lithium daily for six years now, and it has changed my life.

There are other vitamins  (all the B's, zinc, choline, etc) caused by malabsorption syndrome from celiac disease that will affect how quickly your body will heal, but these two had the greatest effect on my mental health.

 

Thank you so much:)

I have insufficient levels of vitamin D which is 22,vitamin B 12 was low. I’m taking vitamin D now and b12. Never heard about lithium.. will start magnesium tomorrow. Which one is better zinc or magnesium?

[cristiana]

33 minutes ago, Sabaarya said:

Interesting :).

Cristiana,how long did it take for your tingling and iron deficiency to get better. My hemoglobin was 11.5,not so bad but ferritin is extremely low 3.9,so I do take iron supplement only once a day,otherwise it would cause very bad upset stomach for me…

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. 

[Wheatwacked]

2 hours ago, Sabaarya said:

Which one is better zinc or magnesium

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.