Newly diagnosed - Very anxious

[sadfaceemoji]

Hi, i have been recently diagnosed with celiac disease (age 21) after a long 5 years of symptoms that doctors originally told me is IBS. I recently visited the GI doctor who said my blood tests levels were the highest he has ever seen (>700) and the damage is marsh stage 3A. i have never really been an anxious or upset person until the last 6 months trying to get a diagnosis and especially after hearing this.However, since i have been googling about celiac disease, i have been really stressing myself out about other related illnesses including cancer/lymphoma. Then also worrying about potentially not reacting to a gluten-free diet (refractory celiac). so i enter a deep rabbit hole of continuous googling and almost looking for symptoms in addition to the ones i already have. i have only been eating gluten-free around 2 months and still feeling tired, finding it hard to maintain weight , bone pain etc. I think my issue is that i feel quite alone, so i turn to google to find answers which does not work in my favour

any thoughts are appreciated i am just looking for some reassurance that i will begin to feel better / that i am not alone.

 

Thankyou

[trents]

Welcome to the forum, sadfaceemoji!

One piece of advice I would give would be to connect with a local celiac group for support. Do you mind sharing with us where you live? Perhaps another forum member lives in your area and can help you connect. Also, I believe some of the online dating services have matchup categories for celiac/gluten intolerant people.

It often takes around two years for complete healing of the damaged villi. But, you should start feeling better before then.

Recent studies have shown that most people who claim to be eating gluten-free are actually practicing lower gluten eating. This is particularly true of those who still eat out. It is nearly impossible to avoid cross contamination in restaurant settings. Here is a primer that might be helpful: 

Are you still eating dairy and oats? Many celiacs cannot tolerate these two foods. Eggs is another common co-intolerant food for many celiacs. For some, dairy protein (casein) an blunt the villi like gluten does.

You should also consider taking a gluten free B-complex, about 5000IU of D3 and a magnesium supplement. Nutritional deficiencies go hand in hand with celiac disease because of the damage done to the small bowel lining. Choose a form of magnesium that has good assimilate such as magnesium glycinate. Titrate up on that one to avoid the laxative effect magnesium can have. 

[sadfaceemoji]

15 minutes ago, trents said:

Welcome to the forum, sadfaceemoji!

One piece of advice I would give would be to connect with a local celiac group for support. Do you mind sharing with us where you live? Perhaps another forum member lives in your area and can help you connect. Also, I believe some of the online dating services have matchup categories for celiac/gluten intolerant people.

It often takes around two years for complete healing of the damaged villi. But, you should start feeling better before then.

Recent studies have shown that most people who claim to be eating gluten-free are actually practicing lower gluten eating. This is particularly true of those who still eat out. It is nearly impossible to avoid cross contamination in restaurant settings. Here is a primer that might be helpful: 

Are you still eating dairy and oats? Many celiacs cannot tolerate these two foods. Eggs is another common co-intolerant food for many celiacs. For some, dairy protein (casein) an blunt the villi like gluten does.

You should also consider taking a gluten free B-complex, about 5000IU of D3 and a magnesium supplement. Nutritional deficiencies go hand in hand with celiac disease because of the damage done to the small bowel lining. Choose a form of magnesium that has good assimilate such as magnesium glycinate. Titrate up on that one to avoid the laxative effect magnesium can have. 

Hi trents, thankyou for your reply i appreciate it. Due to certain lifestyle requirements at the moment it is almost impossible for me not to eat at restaurants but i am as careful as i can be that these are certified by coeliac UK and that appropriate precautions are taken. I think unfortunately it would also make me feel worse about the diagnosis if i was unable to eat at restaurants completely  which worries me. 

I am still eating dairy, not oats. But i will discuss the possibilities with GI doctor at my next appointment. 

I have previously been told about borderline deficiencies of Iron, vitamin D and B12 but these have since improved and i am continuing to take supplements

Thankyou so much for your advice  

 

[C4Celiac]

Well your lifestyle requirements have changed forever.

You shouldn't be eating at restaurants unless it's a dedicated gluten free place. Gluten free menus at normal restaurants are dangerous. No it won't make you feel worse, it will make you feel better since you're not eating food contaminated with Gluten. If you regularly eat at normal restaurants then you'll be eating Gluten eventually.

If you don't have time to cook from scratch then buy certified gluten free meals to heat up.

Yes I worried about refractory too after being diagnosed but the odds of you having it are like almost 0.

I wouldn't worry about Cancer.. as long as you stay away from Gluten you'll be fine. I read a study once that said only 30% of people who continue eating gluten with celiac disease will develop anything serious. So if you're on a strict gluten free diet you should be fine.

700 is high.. there's been higher here..    It makes no difference what the number is at diagnoses. It should drop fast in the beginning when you cut out huge amounts of gluten.

I will take at least a year for you to feel better. maybe 2...    700 will not drop to normal range in under a year..

and certainly not if you are regularly.

[trents]

More on CMP (cow's milk protein) and villi blunting:

https://pubmed.ncbi.nlm.nih.gov/2262836/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1810502/

I would go armed with information to that GI doc about CMP and villi blunting. Those of us who have been emersed in the celiac world for some years have learned that the medical community is surprisingly ignorant of gluten-related maladies, GI docs not excluded.

[C4Celiac]

I asked my Dr about milk protein..  he said its only seen in Children.

You trying to take away my gluten free Pizza?

[trents]

As C4Celiac said, bowel cancer from celiac disease is higher in incidence than it is for the general population but still statistically very unlikely.

[trents]

1 minute ago, C4Celiac said:

I asked my Dr about milk protein..  he said its only seen in Children

A classic example of medical ignorance. The two links I supplied above refute the idea it is only seen in children.

[MADMOM]

5 hours ago, sadfaceemoji said:

Hi, i have been recently diagnosed with celiac disease (age 21) after a long 5 years of symptoms that doctors originally told me is IBS. I recently visited the GI doctor who said my blood tests levels were the highest he has ever seen (>700) and the damage is marsh stage 3A. i have never really been an anxious or upset person until the last 6 months trying to get a diagnosis and especially after hearing this.However, since i have been googling about celiac disease, i have been really stressing myself out about other related illnesses including cancer/lymphoma. Then also worrying about potentially not reacting to a gluten-free diet (refractory celiac). so i enter a deep rabbit hole of continuous googling and almost looking for symptoms in addition to the ones i already have. i have only been eating gluten-free around 2 months and still feeling tired, finding it hard to maintain weight , bone pain etc. I think my issue is that i feel quite alone, so i turn to google to find answers which does not work in my favour

any thoughts are appreciated i am just looking for some reassurance that i will begin to feel better / that i am not alone.

 

Thankyou

i was the same since i got on this blog and everyone on here has been so helpful and insightful - calmed me down and i’ve been so much better - been gluten-free for 16 months - had most of the symptoms you had and they have subsided immensely - i take my supplements and follow a strict gluten-free diet and have gotten my levels down so much in the first 8 months - going back to GI soon for a followup - stay strong 

[sadfaceemoji]

Thankyou so much everyone. This is so helpful, Really appreciate it 

[MADMOM]

feel free to ask more questions or compare symptoms etc - this forum gave me so much peace- i am sure it will do the same for you 

[sadfaceemoji]

21 minutes ago, MADMOM said:

feel free to ask more questions or compare symptoms etc - this forum gave me so much peace- i am sure it will do the same for you 

Thankyou that means alot, you are so right! it definitely helps to know that i am not alone. I had to eat gluten right up until i had an endoscopy which was around 3 months after the initial blood test so it was really hard. Regarding symptoms at the moment some days are better than others - i sometimes get pains under my ribs after anything i eat, itchy skin no visible rash (which i wasn't sure if this is anxiety related), generally feeling tired, pains in bones/legs/tingling sometimes that seems to migrate anywhere and headaches. Something which has been quite unusual for me is having a very anxious mindset, thinking the worst of everything and getting easily upset.  but physically, i am feeling no where near as bad as i used to feel so that is a good thing! 

I'm also just trying to find some good meal suggestions (breakfast,lunch,dinner,snacks) too as i have lost a lot of weight and would like to put some on - if anyone see's this and can recommend anything , any books or websites that would be helpful please

[C4Celiac]

you probably won't gain weight for a while..  its been almost 2 years for me and I still haven gained my normal weight back

[shadycharacter]

5 hours ago, C4Celiac said:

I asked my Dr about milk protein..  he said its only seen in Children.

You trying to take away my gluten free Pizza?

There is vegan cheese, so you can still have pizza.

[Kate333]

Hi.  Your comments reminded me that I felt the same emotions after my diagnosis in late 2019:  worried and very alone.  And those feelings only intensified after I spent hours surfing the internet, reading about celiac disease symptoms, worst-case scenarios, etc.  I found that this habit sucked me into that "deep rabbit hole" of health anxiety you so vividly describe.   IMO well-intended chatrooms like this are initially very useful to celiac disease diagnosis "newbies" seeking basic facts and moral support.  But they also tend to be full be personal opinions, advice based on anecdotal experiences, and product endorsements which may (or may not) apply to your case.   

I know younger people love social media/internet 24/7 but try to limit it to give your mind a break from worry and some rest.  And make sure you are getting enough sleep at night.  Also, you might ask your doc for a referral for possible counseling and/or a low dose trial of anti-depressant/anxiety meds.  One good thing about the net is there are many free resources for meditation/relaxation videos on the net.  I found the website anxietycentre.com very helpful as it describes the mind-body connection very clearly and details how anxiety can often show up in many physical symptoms, including fatigue, pain, and GI problems. 

Now for the good news:  you are VERY young, so your body will likely more rapidly recover than folks older when first diagnosed-- provided you adopt and maintain a strict, gluten-free diet.  I was decades older when diagnosed. My GI doc said TTG levels should drop by 50 percent every 3-4 months.  And sure enough, that happened: my TTG was 224 when first tested, then it reached a normal level nearly 2 years later.   Your doctor should do follow-up blood tests and EGD to assess your body's healing progress and response to the gluten-free diet.  

Best of luck on your healing journey!

[Ivana]

Hello,

I felt exactly the same when I was diagnosed 2 years ago. Same anxiety, same thoughts, same behaviours, except that my antibodies were almost a 1000, and Marsh 3C, and I was quite older than you. But now, celiac is for the most part not even on my mind. My antibodies normalised within one year and stayed that way. I eat in dedicated gluten free restaurants relatively often (there is one just accross from my work, so...), and I travel quite frequently too. And by now, members of my family are quicker to think about my celiac problem when I go travel (asking me what I will eat, whether there is gluten free where I will be staying staying), than I am (maybe because I am sick of worrying about it). I know I will manage, there is plenty of naturally gluten free food to surive on, one way or the other. In sum, my life is pretty much the same as pre diagnosis, except for cooking more and not eating in ordinary restaurants anymore (which I have also done on occassion post diagnosis, but in countries known for their celiac awareness, not in my own). It is probably a bit harder for a young person who socialises and goes out way more than me, but I am sure you will find your way too. I would advise to do your best in avoiding gluten (I do that, in case it wasn't clear from this rather easy going reply , my household is completely gluten free too), but don't let thoughts of it take over your life. I believe that fear and worry can do more damage to your health than many "physical" conditions. I often look at smokers (and there are many in my country), they know about all the risks associated with smoking, and still they enjoy their cigarettes. So if they are not worried, why should I be, when I am the one who has eliminated poison (gluten) from my life, unlike them. I know I am lucky not to have developed any significant symptoms or complications related to celiacs (thus far), but as long as that is the case, there is no need to think of all the what ifs. I am now honestly baffled at how I could have been so crazy with worry in the beginning and you will probably feel like that too in the near future. Best wishes!

 

[C4Celiac]

1,000 to normal in 1 year?  how did  you manage that..  I only had a bit over 100 and still not normal in 1 year and 4 months..  almost but 5 points away still. and I was very strict with my diet

[sadfaceemoji]

10 hours ago, Ivana said:

Hello,

I felt exactly the same when I was diagnosed 2 years ago. Same anxiety, same thoughts, same behaviours, except that my antibodies were almost a 1000, and Marsh 3C, and I was quite older than you. But now, celiac is for the most part not even on my mind. My antibodies normalised within one year and stayed that way. I eat in dedicated gluten free restaurants relatively often (there is one just accross from my work, so...), and I travel quite frequently too. And by now, members of my family are quicker to think about my celiac problem when I go travel (asking me what I will eat, whether there is gluten free where I will be staying staying), than I am (maybe because I am sick of worrying about it). I know I will manage, there is plenty of naturally gluten free food to surive on, one way or the other. In sum, my life is pretty much the same as pre diagnosis, except for cooking more and not eating in ordinary restaurants anymore (which I have also done on occassion post diagnosis, but in countries known for their celiac awareness, not in my own). It is probably a bit harder for a young person who socialises and goes out way more than me, but I am sure you will find your way too. I would advise to do your best in avoiding gluten (I do that, in case it wasn't clear from this rather easy going reply , my household is completely gluten free too), but don't let thoughts of it take over your life. I believe that fear and worry can do more damage to your health than many "physical" conditions. I often look at smokers (and there are many in my country), they know about all the risks associated with smoking, and still they enjoy their cigarettes. So if they are not worried, why should I be, when I am the one who has eliminated poison (gluten) from my life, unlike them. I know I am lucky not to have developed any significant symptoms or complications related to celiacs (thus far), but as long as that is the case, there is no need to think of all the what ifs. I am now honestly baffled at how I could have been so crazy with worry in the beginning and you will probably feel like that too in the near future. Best wishes!

 

Thankyou for this, so so helpful - i guess i need to allow myself the time to get rid of these initial negative thoughts. Glad to hear you are doing so well!

[sadfaceemoji]

15 hours ago, Kate333 said:

Hi.  Your comments reminded me that I felt the same emotions after my diagnosis in late 2019:  worried and very alone.  And those feelings only intensified after I spent hours surfing the internet, reading about celiac disease symptoms, worst-case scenarios, etc.  I found that this habit sucked me into that "deep rabbit hole" of health anxiety you so vividly describe.   IMO well-intended chatrooms like this are initially very useful to celiac disease diagnosis "newbies" seeking basic facts and moral support.  But they also tend to be full be personal opinions, advice based on anecdotal experiences, and product endorsements which may (or may not) apply to your case.   

I know younger people love social media/internet 24/7 but try to limit it to give your mind a break from worry and some rest.  And make sure you are getting enough sleep at night.  Also, you might ask your doc for a referral for possible counseling and/or a low dose trial of anti-depressant/anxiety meds.  One good thing about the net is there are many free resources for meditation/relaxation videos on the net.  I found the website anxietycentre.com very helpful as it describes the mind-body connection very clearly and details how anxiety can often show up in many physical symptoms, including fatigue, pain, and GI problems. 

Now for the good news:  you are VERY young, so your body will likely more rapidly recover than folks older when first diagnosed-- provided you adopt and maintain a strict, gluten-free diet.  I was decades older when diagnosed. My GI doc said TTG levels should drop by 50 percent every 3-4 months.  And sure enough, that happened: my TTG was 224 when first tested, then it reached a normal level nearly 2 years later.   Your doctor should do follow-up blood tests and EGD to assess your body's healing progress and response to the gluten-free diet.  

Best of luck on your healing journey!

Thankyou so much - this is very reassuring. Completely agree with your advice and definitely something to work on with limiting my internet use! 

[Beverley Ann Johnson]

On 5/21/2022 at 12:54 PM, C4Celiac said:

I asked my Dr about milk protein..  he said its only seen in Children.

You trying to take away my gluten free Pizza?

Gluten Free Pizza Recipe - BEST EVER! (NO YEAST) (glutenfreecuppatea.co.uk) you might want to try this home made crust I found on the web.  It is easy and fast to make, I added a small bit of olive oil to my hands during the kneading and instead of pan frying I baked it in the oven (without the topping) for about 10 minutes then dressed it and baked until cooked.  My first try and it was amazing, far better than any traditional crust, good luck.

 

[Beverley Ann Johnson]

3 minutes ago, Beverley Ann Johnson said:

Gluten Free Pizza Recipe - BEST EVER! (NO YEAST) (glutenfreecuppatea.co.uk) you might want to try this home made crust I found on the web.  It is easy and fast to make, I added a small bit of olive oil to my hands during the kneading and instead of pan frying I baked it in the oven (without the topping) for about 10 minutes then dressed it and baked until cooked.  My first try and it was amazing, far better than any traditional crust, good luck.

Gluten Free Pizza Recipe - BEST EVER! (NO YEAST) (glutenfreecuppatea.co.uk)

 

 

[MADMOM]

4 hours ago, Beverley Ann Johnson said:

Gluten Free Pizza Recipe - BEST EVER! (NO YEAST) (glutenfreecuppatea.co.uk) you might want to try this home made crust I found on the web.  It is easy and fast to make, I added a small bit of olive oil to my hands during the kneading and instead of pan frying I baked it in the oven (without the topping) for about 10 minutes then dressed it and baked until cooked.  My first try and it was amazing, far better than any traditional crust, good luck.

 

Freschetta makes a delicious gluten free frozen pizza -my kids fight me for it lol

[Ivana]

16 hours ago, C4Celiac said:

1,000 to normal in 1 year?  how did  you manage that..  I only had a bit over 100 and still not normal in 1 year and 4 months..  almost but 5 points away still. and I was very strict with my diet

Hello, I think these things differ from person to person, and the number itself is not crucial. Also, maybe different labs have different sensitivity levels, so it's also possible that smaller numbers were actually much bigger and vice versa? My reading of 979 was where regular values are below 20, 20-30 mild positive, above 30 positive. After 10 and a half months this fell to 38. And after additional 3 months to 3.4, BUT in a different lab where below 7 is negative, above 10 positive. 

I would also consider myself strict with my diet in the first year. I mostly ate homecooked meals, and only occassionally in dedicated gluten free restaurants. However, I still had some processed food, mostly labeled gluten free, but not always (rest being processed food that didn't list gluten as alergen, and that was considered safe by local celiac community, checked with the manufacturer, etc.). I didn't really have oats, though, but I ate everything else. I was thinking I should first check whether even with non 100 percent cooked meals I could get my antibodies normalised and not limit too much in my food choice from the start if that was not necessary. (I am also a "silent celiac", still, so it's hard to tell one way or the other.) If not, plan B was to really not eat anything processed, just meals made of fresh ingredients that had no chance of getting contaminated. I saw everyone reacted differently so this was an experiment for me, and it also allowed me to have further options in case my results were not so good. When I saw the antibodies did get normalised, I relaxed a bit, not in the sense that I got totally reckless, but I didn't fret over every bite of something packaged that was not certified gluten free, or about whether my meat at the butcher's was contaminated somehow, or whether the coffee I drink out in cafes EVERY DAY is safe or not. I also ate processed food more often and out in gluten-free restaurants more often. Then I introduced oats (certified) as well. Six months later my antibodies were still negative. So I think I found what works for me and I advise everyone to do the same, find what works for them. I will keep checking every 6 months however, just in case something changes suddenly. 

I read that it can take longer for antibodies to normalise too, so don't get discouraged, you seem to be on the right path too. Best wishes!

[C4Celiac]

17 hours ago, MADMOM said:

Freschetta makes a delicious gluten free frozen pizza

i eat Caulipower pizza

[sadfaceemoji]

just wondering if anyone else continued to lose weight a short while after going gluten free? is this normal? i don't know if it is stress or that i've started eating a lot more fruit and veg or something else. im being as careful as possible & i know it may take a while to get my weight 'back to normal' but any advice / experiences with weight appreciated