My symptoms are getting worse.

[Alfrieda]

Hello,

I am in week 4 of gluten free living since my celiac diagnoses. I am doing the best I can. I eat very few things that are pre-made and those that I do are gluten-free. However, I am learning that not all gluten-free products are going to work for me so I'm still very much in the early stages of learning to live with this disease. All of that being said, I am finding some of my symptoms to be worsening. Most digestive issues cleared up very quickly. The symptoms I am really struggling with include joint pain, muscle aches, extreme fatigue (I have also been struggling with iron deficient anemia and had my last iron infusion a little over a week ago) and depression. Are these issues relatively normal at this stage? Any advice on things I can be doing to help my adjustment would be appreciated. PS - I have not cut out all dairy.

Thank you.

[trents]

Welcome to the forum community Alfrieda!

You are probably experiencing gluten withdrawal. 

You also need to look into vitamin and mineral supplementation as celiac disease damages the lining of the small bowel which in turn typically creates vitamin and mineral deficiencies. The "villi" of the small bowel lining is the organ system that is responsible for absorbing nutrients from our food and with celiac disease these villi get damaged and worn down. I would recommend you start taking an adult gluten free multivitamin and also a gluten free B complex. Costco is a good place to get these.

And you really should eliminate dairy and oats for the time being. These can create inflammation similar of the small bowel similar to gluten.

[Scott Adams]

Welcome to the forum! I agree with @trents and just want to add that it's never a bad idea to re-check your diet to be sure it's 100% gluten-free. The diet alone does not work 100% for everyone though, and the article below may be helpful. Also, keep in mind that the average time for full recovery is two years, so no matter what it's going to take some time to recover.

 

[cristiana]

Hi Alfrieda

I too like I was taking one step forward, two back, early on in my gluten-free diet.  It really does take time.  

Try supplementing magnesium in your diet, or taking warm (not hot) baths for about 20 minutes with a fistful of Epsom salts thrown in for muscle and joint pain. Take care not to fall asleep in the bath though, it's very relaxing.  This was recommended to me by a ballet dancer, apparently dancers swear by it!

I felt very anxious when I was first diagnosed, and one of things that really helped me was Dr Steve Llardi's book, The Depression Cure: The Six Step Programme.  He's a medical doctor and he encourages the reader to to make sure they are getting exercise, omega-3 fatty acids, natural sunlight exposure, restorative sleep, social connectedness, meaningful, engaging activity which all help to combat depression.  Of course, you don't need to buy the book, these are things that you can look at yourself.  

If you are really struggling with depression do see a doctor.  We sometimes do need some extra help.

Take good care.

Cristiana

 

[CMCM]

I suspect a lot of people eventually discover that gluten isn't the solitary cause of their symptoms.  They identify the gluten problem, go gluten free, think the problem is solved, and then they don't get better.  Eliminating just gluten often isn't enough.  

The dairy protein casein can cause a sensitivity that is frequently found along with gluten sensitivity in a lot of people.  I've always had problems with dairy, and when I had an Enterolab test for gluten sensitivity they also tested for casein sensitivity and said I also had antibodies to that as well.  They also said it should be eliminated from my diet same as gluten.  I didn't get better until I eliminated casein AND gluten.

Also worth considering is that if you've been suffering from the effects of gluten sensitivity and/or celiac disease over a period of time before diagnosis, the ongoing damage can lead to numerous other sensitivities that tag along with it.  In some cases and over enough healing time, you might be able to eat some of those foods again in the future once your system has calmed down and healed from the gluten.

 

[GodsGal]

20 hours ago, Alfrieda said:

Hello,

I am in week 4 of gluten free living since my celiac diagnoses. I am doing the best I can. I eat very few things that are pre-made and those that I do are gluten-free. However, I am learning that not all gluten-free products are going to work for me so I'm still very much in the early stages of learning to live with this disease. All of that being said, I am finding some of my symptoms to be worsening. Most digestive issues cleared up very quickly. The symptoms I am really struggling with include joint pain, muscle aches, extreme fatigue (I have also been struggling with iron deficient anemia and had my last iron infusion a little over a week ago) and depression. Are these issues relatively normal at this stage? Any advice on things I can be doing to help my adjustment would be appreciated. PS - I have not cut out all dairy.

Thank you.

Good morning! I remember those days. I remember how emotionally hard it was for me. I felt very overwhelmed and exhausted from all of the sudden, unexpected change. I had to do a lot of grieving. I found it really helpful to talk with a therapist. I also have a few friends that have walked the path before me. And, this forum has been wonderful! 

So it could very well be that you are dealing with vitamin deficiencies. Have you looked at vitamin d recently? It could be related to the dairy products. It could be withdrawal. But, it could also be just a step in the very normal grief process. 

You can do this, my friend. Hang in there and keep us posted!

[Kate333]

Cristiana and GodsGal comments are spot on.

The fatigue and muscle aches, pain are classic physical symptoms of anxiety and depression, esp. long-standing or severe A & D, understandably exacerbated during a stressful pandemic.  In addition to seeking counseling, there are many free online resources.  I particularly find Anxietycentre.com a great resource because it has many articles explaining how our emotions can create or contribute to physical symptoms like fatigue, aches and pains, indigestion etc.  I also use Calm.com and other free meditation tips on YouTube.

Best of luck on your healing journey.      

[JD-New to Celiac]

Welcome Alfrieda.

I am fairly new to all of this being diagnosed last August and I will tell you it was an absolute nightmare the first month or two as I adjusted to this new lifestyle. It was surprising to me that even small amounts of gluten can continue to cause problems so I tossed out my toaster and several other items that might cause problems that I found in my kitchen, bath, medicine cabinet, etc. As for food options, you will need to learn what you can eat. I will briefly give you my journey if it helps spark a few ideas for you. I did meet with a nutritionist but I found I needed to do this on my own as we are all unique. I kept a diary listing foods that worked and foods that did not work. I had an advantage (if you can call it that) as I learned in the beginning that I am allergic to dairy, soy, eggs, and fish. So, if you add gluten to that list there isn't much left to eat. I also learned through trial and error I cannot tolerate meat, oats, some spices, onions, many green leafy veggies, garlic, and the list went on and on. At the moment I only eat about eight or nine things so supplements became necessary and I've followed the suggestions of many on this blog. It has been about eight months now and I still get sick sometimes, especially when trying a new food, but not like I did eight months ago. So, I feel as if I am starting to heal and slowly tolerating some of those foods I once loved. I would suggest the basics for now but supplement with vitamins and minerals. I believe if you go bland and basic it is tolerated much better. I don't plan to eat like this forever and every week I look for items to add to my diet. If they work they go on the plus side of my diary list. If not, I write it on the NO side and add why it did not work and include a date. I like to go back periodically and try again so the date for me is important. I also keep track of carbs, protein and fat, so I am eating enough every day. I actually eat quite a bit in order to maintain my weight. I think exercise is also important for the body and for the mind and I believe it is a good idea to find a treat you can tolerate that brings you joy. For example, I could no longer do coffee but I found I could tolerate chai and I fell in love with the flavor. Bread was tough but I finally found one that was allergy free and satisfied that craving. I've even had some success at baking bread! I never thought I would do that. Good luck to you on this journey. There are many wonderful folks on this blog that can share their experiences. Reach out whenever you need us.

[Rebmes]

Hi

Welcome and sorry for the circumstances.

If it's OK I'd like to add a thing or two - first is, make sure your doctor is aware of all of your symptoms, regardless of what's said here. No one but your doctor is qualified to give you medical advice.

Second, make sure you're taking care of your pain management. Find a good balance that works for you. Every auto-immune case is different; some things are bound to work, so don't give up.

Oh, last but not least, be aware that you may still be consuming gluten, be it through toothpaste, supplements or other innocuous-looking things. It took over 6 months for my wife and I to figure it all out.

Good luck, and stay strong.

[Beverage]

I felt like a truck hit me after going gluten free, for about 2 months. I did not have the typical intestinal symptoms before, but was bloated, about 20 lbs overweight after being very slim my whole life, failing kidneys, and lots of severe allergies and asthma.  After going gluten free, I dropped 30+ lbs the first month, underneath I was a bag of bones, underneath I had been literally starving.  Everything hurt, I was very weak, and could barely function. 

My blood tests had also shown very high candida albicans antibodies.  It could have been related, as going gluten free could have lead to a lot of the candida suddenly dying off and causing what is called the "herxheimer reaction."  I read every article I could find on it, made sure I was NOT eating sugar or any refined gluten free products, which would feed it.  I drank lots and lots and lots of water, ate only whole real food, added some supplements, and it finally went away.

Here's some info:  https://draxe.com/health/candida-die-off/

 

[Alfrieda]

Hello,

I have found everyone's responses very helpful and it's reassuring to know I am not alone in this journey. I am now in week 2 of cutting out dairy in addition to the gluten. Also, starting this week I am eating only what I make for myself. I have a glimmer of hope as I do feel as though my symptoms are improving. Thank you to all of you for the shared advice, suggestions and articles. Hope everyone is well.

[Jilli]

I just wanted to chime in and thank all of you--Alfrieda, and the responses to the post.  I'm still struggling emotionally with having celiac and the gluten free diet.  Intellectually, I know what I need to do and have done the important things (lab tests, scans, eating gluten-free, double checking anything before I consume it, etc) but the emotional side of me resists other things I should probably do (give up dairy, coffee, sugar free sodas, keep a food diary, etc.).  I feel cheated and that it's not fair to give up all gluten, then on top of that, to have to give up non-gluten things that I love because they might be causing trouble.  Like many of you have or still are, I'm struggling with stomach pain, depression, general but strong fatigue and more.  I have an appointment with a GI celiac specialist and hope I get some solutions.  But at least I feel encouraged and hopeful that if I can get myself over the hump and accept all of this completely, that maybe I can eliminate other things that could be causing trouble.   

Thanks again and I hope we all improve in body and mind, quickly and completely.

[Beverage]

7 minutes ago, Jill Coyle said:

While you are waiting, try following Peter Osborne on youtube (he wrote No Grain No Pain) and learn a lot more about vitamins and supplements.  I've learned a lot from him, about the best forms of these that are best absorbed and used by your body, and lots of other info.

https://www.youtube.com/user/Glutenology

 

 

[GodsGal]

1 hour ago, Jill Coyle said:

I just wanted to chime in and thank all of you--Alfrieda, and the responses to the post.  I'm still struggling emotionally with having celiac and the gluten free diet.  Intellectually, I know what I need to do and have done the important things (lab tests, scans, eating gluten-free, double checking anything before I consume it, etc) but the emotional side of me resists other things I should probably do (give up dairy, coffee, sugar free sodas, keep a food diary, etc.).  I feel cheated and that it's not fair to give up all gluten, then on top of that, to have to give up non-gluten things that I love because they might be causing trouble.  Like many of you have or still are, I'm struggling with stomach pain, depression, general but strong fatigue and more.  I have an appointment with a GI celiac specialist and hope I get some solutions.  But at least I feel encouraged and hopeful that if I can get myself over the hump and accept all of this completely, that maybe I can eliminate other things that could be causing trouble.   

Thanks again and I hope we all improve in body and mind, quickly and completely.

Hi Jill, 

I have had a hard time emotionally as well. It is getting easier now. But especially the first few months, there were many tears.

I found it really helpful to talk with a counselor. While going gluten free is healing for us, in many ways, going gluten free is also in incredible loss. My counselor helped me to grieve. I still have my moments. And, when someone mentions, "You give up/stop eating ___," inwardly I groan.

Also, do you know anyone else in your community that also has celiac or gluten sensitivity? I have a couple of good friends that I was able to relate to. Sometimes I think that it is really nice just to be able to talk in person to someone who understands.

I think that what you are feeling right now is totally normal. Depression, anxiety, panic, anger, it's all very real and normal. You are not in this alone. You have a whole community walking with you. Remember to breathe and give yourself a little grace. 

Keep in conversation with your GI and keep us posted. I know that it's rough. You can do it, my friend. 

[CMCM]

On 4/12/2021 at 9:07 AM, Alfrieda said:

Hello,

I am in week 4 of gluten free living since my celiac diagnoses. I am doing the best I can. I eat very few things that are pre-made and those that I do are gluten-free. However, I am learning that not all gluten-free products are going to work for me so I'm still very much in the early stages of learning to live with this disease. All of that being said, I am finding some of my symptoms to be worsening. Most digestive issues cleared up very quickly. The symptoms I am really struggling with include joint pain, muscle aches, extreme fatigue (I have also been struggling with iron deficient anemia and had my last iron infusion a little over a week ago) and depression. Are these issues relatively normal at this stage? Any advice on things I can be doing to help my adjustment would be appreciated. PS - I have not cut out all dairy.

Thank you.

I found dairy to be a major culprit in the joint pain and muscle aches I had.  Most of my digestive issues were considerably better after 2 to 3 weeks.  I am currently at nearly 16 weeks gluten, dairy, corn and sugar free and the joint pain is considerably better, but not yet gone.  I hope it will eventually fade away completely, but I guess you can't ever be sure.    

I would really suggest that you cut out dairy as well as gluten....sensitivity to both of these are often found together.  

[Jilli]

2 hours ago, GodsGal said:

Hi Jill, 

I have had a hard time emotionally as well. It is getting easier now. But especially the first few months, there were many tears.

I found it really helpful to talk with a counselor. While going gluten free is healing for us, in many ways, going gluten free is also in incredible loss. My counselor helped me to grieve. I still have my moments. And, when someone mentions, "You give up/stop eating ___," inwardly I groan.

Also, do you know anyone else in your community that also has celiac or gluten sensitivity? I have a couple of good friends that I was able to relate to. Sometimes I think that it is really nice just to be able to talk in person to someone who understands.

I think that what you are feeling right now is totally normal. Depression, anxiety, panic, anger, it's all very real and normal. You are not in this alone. You have a whole community walking with you. Remember to breathe and give yourself a little grace. 

Keep in conversation with your GI and keep us posted. I know that it's rough. You can do it, my friend. 

Thank you for your support, advice and kind words.  I'm glad it's getting easier for you, and I hope it does for me as well. 

I'm not sure I'm doing this blog thing correctly.   In spite of using computers, cell phones and many electronic devices for half of my life, I'm still not comfortable with them--LOL!    For example, I didn't intend for my actual name to show up on the posts.  If you know how I can change that to a pseudonym, I'd appreciate the info.  I messaged the administrators and hope they respond as I couldn't figure out how to do it. 

Yes, I guess it is about grieving and that's what I feel like I'm doing the majority of the time. I just have to get to the healing stage.  I was diagnosed about 9 months ago, but I now realize I've had this for my entire life so I'm not sure what it's like to feel "normal".  I've pushed through everything--all the stomach issues, the migraines, the iron deficiency--the list goes on.  So that's all I know how to do.  

Now that you mention it, I do know one person who has gluten sensitivity but I don't know her very well.  I could reach out to her and see if a connection develops.  She might appreciate someone to talk with as well.  Counseling is a very good idea and frankly, I don't have the time right now.  But I'll keep it in mind.

When someone mentions how easy it is to "just don't eat _______", inwardly I want to scream or cry.  I realize people who don't have to live this life don't understand, but it comes across as extremely insensitive and belittling.  And to make it worse, I'm a therapeutic baker--I love to bake and it calms my mind.  Except for a pie crust and some banana bread, everything I've tried in the baked goods world has turned out awful--to the point that I'm not baking anymore.  I figure I'll start again if and when I'm ready.

Well, thanks for reading/listening.  I have no idea if this is just posted to you, GodsGal, or if this is going out to everyone.  It is what it is and it will be what it will be!

Thanks again...

JC

[Jilli]

On 4/13/2021 at 7:59 PM, JD-New to Celiac said:

Welcome Alfrieda.

I am fairly new to all of this being diagnosed last August and I will tell you it was an absolute nightmare the first month or two as I adjusted to this new lifestyle. It was surprising to me that even small amounts of gluten can continue to cause problems so I tossed out my toaster and several other items that might cause problems that I found in my kitchen, bath, medicine cabinet, etc. As for food options, you will need to learn what you can eat. I will briefly give you my journey if it helps spark a few ideas for you. I did meet with a nutritionist but I found I needed to do this on my own as we are all unique. I kept a diary listing foods that worked and foods that did not work. I had an advantage (if you can call it that) as I learned in the beginning that I am allergic to dairy, soy, eggs, and fish. So, if you add gluten to that list there isn't much left to eat. I also learned through trial and error I cannot tolerate meat, oats, some spices, onions, many green leafy veggies, garlic, and the list went on and on. At the moment I only eat about eight or nine things so supplements became necessary and I've followed the suggestions of many on this blog. It has been about eight months now and I still get sick sometimes, especially when trying a new food, but not like I did eight months ago. So, I feel as if I am starting to heal and slowly tolerating some of those foods I once loved. I would suggest the basics for now but supplement with vitamins and minerals. I believe if you go bland and basic it is tolerated much better. I don't plan to eat like this forever and every week I look for items to add to my diet. If they work they go on the plus side of my diary list. If not, I write it on the NO side and add why it did not work and include a date. I like to go back periodically and try again so the date for me is important. I also keep track of carbs, protein and fat, so I am eating enough every day. I actually eat quite a bit in order to maintain my weight. I think exercise is also important for the body and for the mind and I believe it is a good idea to find a treat you can tolerate that brings you joy. For example, I could no longer do coffee but I found I could tolerate chai and I fell in love with the flavor. Bread was tough but I finally found one that was allergy free and satisfied that craving. I've even had some success at baking bread! I never thought I would do that. Good luck to you on this journey. There are many wonderful folks on this blog that can share their experiences. Reach out whenever you need us.

Hi Alfrieda,

You mention you cannot tolerate meat, among other things and my GP has advised me to get my gall bladder tested in every way possible.  He says that sometimes a gall bladder can be dysfunctional without have anything obvious like gall stones or an infection.

Probably a long shot, but just in case.  It's on my list of things to get tested, that's for sure.

Good luck,

JC

[trents]

2 hours ago, Jill Coyle said:

Thank you for your support, advice and kind words.  I'm glad it's getting easier for you, and I hope it does for me as well. 

I'm not sure I'm doing this blog thing correctly.   In spite of using computers, cell phones and many electronic devices for half of my life, I'm still not comfortable with them--LOL!    For example, I didn't intend for my actual name to show up on the posts.  If you know how I can change that to a pseudonym, I'd appreciate the info.  I messaged the administrators and hope they respond as I couldn't figure out how to do it. 

Yes, I guess it is about grieving and that's what I feel like I'm doing the majority of the time. I just have to get to the healing stage.  I was diagnosed about 9 months ago, but I now realize I've had this for my entire life so I'm not sure what it's like to feel "normal".  I've pushed through everything--all the stomach issues, the migraines, the iron deficiency--the list goes on.  So that's all I know how to do.  

Now that you mention it, I do know one person who has gluten sensitivity but I don't know her very well.  I could reach out to her and see if a connection develops.  She might appreciate someone to talk with as well.  Counseling is a very good idea and frankly, I don't have the time right now.  But I'll keep it in mind.

When someone mentions how easy it is to "just don't eat _______", inwardly I want to scream or cry.  I realize people who don't have to live this life don't understand, but it comes across as extremely insensitive and belittling.  And to make it worse, I'm a therapeutic baker--I love to bake and it calms my mind.  Except for a pie crust and some banana bread, everything I've tried in the baked goods world has turned out awful--to the point that I'm not baking anymore.  I figure I'll start again if and when I'm ready.

Well, thanks for reading/listening.  I have no idea if this is just posted to you, GodsGal, or if this is going out to everyone.  It is what it is and it will be what it will be!

Thanks again...

JC

Jill,

Celiac.com does have a blog section but you are currently not posting in that area. The name that shows up in your posts is what you supply as a user name when you register as a forum member. It can be anything that isn't already in use by another member. I'm not sure it can be changed without creating a new account. But Scott Adams can answer that question with more certainty. I suggest you send him a PM (Personal Message).

You might also do some googling to see if there is a celiac support group close to you.

Edited April 28, 2021 by trents

[Wheatwacked]

I had to go up to 250 mcg (10,000 IU) of D3 before it broke my depression. After 4 days I was smiling and calling it sunshine in a bottle. After 2 years at 250 mcg then a two week break my D3 blood level was still only 34. It's been 6 years.

[Jilli]

16 hours ago, trents said:

Jill,

Celiac.com does have a blog section but you are currently not posting in that area. The name that shows up in your posts is what you supply as a user name when you register as a forum member. It can be anything that isn't already in use by another member. I'm not sure it can be changed without creating a new account. But Scott Adams can answer that question with more certainty. I suggest you send him a PM (Personal Message).

You might also do some googling to see if there is a celiac support group close to you.

Ok, thanks for the info.

Take care,

JC

 

[Scott Adams]

Welcome to the forum...just send me a personal message with 3 choices of screen names and I'll update it for you. 

 

[Jilli]

Thanks, Scott.  Is this the personal message avenue or do I have to use something else?

JC

[GodsGal]

Hi JC!

If you tap on the name of the person you want to private message, that should take you to their profile page. You should see a little envelope on the right side of the page. Tap on that, and then you will be able to send them a private message. 😊

[trents]

1 hour ago, Jill Coyle said:

Thanks, Scott.  Is this the personal message avenue or do I have to use something else?

JC

The forum PM tool is sort of like in house email that only the recipient sees.

[Jilli]

1 hour ago, GodsGal said:

Hi JC!

If you tap on the name of the person you want to private message, that should take you to their profile page. You should see a little envelope on the right side of the page. Tap on that, and then you will be able to send them a private message. 😊

LOL.  I'm terrible at this!  Thanks for the info.

JC