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My symptoms are getting worse.

Alfrieda
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Alfrieda Newbie
Alfrieda
Posted

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.

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trents Grand Master
trents
Posted

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 Grand Master
Scott Adams
Posted

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 Veteran
cristiana
Posted

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 Rising Star
CMCM
Posted

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 Community Regular
GodsGal
Posted
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 Rising Star
Kate333
Posted

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.      

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JD-FLA Contributor
JD-FLA
Posted

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 Apprentice
Rebmes
Posted

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 Rising Star
Beverage
Posted

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/

 

  • Popular Post
Alfrieda Newbie
Alfrieda
Posted
  • Author
  • Popular Post

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 Rookie
Jilli
Posted

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 Rising Star
Beverage
Posted
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 Community Regular
GodsGal
Posted
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 Rising Star
CMCM
Posted
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 Rookie
Jilli
Posted
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 Rookie
Jilli
Posted
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 Grand Master
trents
Posted
(edited)
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 by trents
Wheatwacked Veteran
Wheatwacked
Posted

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 Rookie
Jilli
Posted
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 Grand Master
Scott Adams
Posted

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

 

Jilli Rookie
Jilli
Posted

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

JC

GodsGal Community Regular
GodsGal
Posted

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 Grand Master
trents
Posted
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 Rookie
Jilli
Posted
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

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      Ocd making gluten fears unmanageable. Need advice

      By knitty kitty · Posted

      Hello, @Dora77, I agree with you that your doctors aren't very knowledgeable about Celiac Disease.  My doctors didn't recognize nutritional deficiencies either.  I became very deficient in vitamins before I was diagnosed, so having experienced similar, I understand what a difficult time you're having.   Poor absorption of essential nutrients is caused by the damage done to the intestines by Celiac Disease.  The gluten free diet can be low in essential nutrients, so supplementing to boost your absorption is beneficial.  New symptoms can develop or worsen as one becomes more and more deficient.   There's eight essential B vitamins that our bodies cannot make, so they must come from our food and supplements.  These eight B vitamins work together, like instruments in an orchestra.  They need to be supplemented together with essential minerals like magnesium.   Deficiencies in the B vitamins can have overlapping symptoms.  Some symptoms can be traced to specific B vitamins.  OCD can be traced to low Pyridoxine Vitamin B 6.  Yes, I had OCD and washed my hands until my skin cracked and bled.  ADHD symptoms can be traced to low Thiamine Vitamin B 1.  ADHD is something one is born with.  People who are born with ADHD have a metabolic problem with getting sufficient thiamine into their brain cells.  People who develop symptoms of ADHD later in life are more likely to be low in Thiamine.  The same symptoms appear if one is not getting sufficient thiamine from the diet.  Yes, I developed symptoms of ADHD.  These symptoms improved and disappeared after supplementing with Thiamine and the other essential nutrients. I was diagnosed with Type Two Diabetes.  99% of diabetics of both types are deficient in Thiamine because our kidneys don't re-absorb thiamine properly.  Thiamine is needed to make insulin and digestive enzymes in the pancreas.  Poor digestion (floating, undigested stools) can result with insufficient pancreatic enzymes.  The gall bladder (upper right quadrant) needs thiamine to make and release bile which also helps with digestion.  Constipation is also a symptom of Thiamine and magnesium deficiencies.  The thyroid is another organ that uses lots of Thiamine, too.  Low thyroid hormones can be due to insufficient thiamine, selenium, iron, and iodine.  Swelling of hands, face and feet are also symptoms of thiamine insufficiency.   Our bodies use thiamine to make energy so organs and tissues can function.  Thiamine cannot be stored longer than three weeks.  If our stores are not replenished every day, we can run out of Thiamine quickly.  If we do get some thiamine from our diet, symptoms can wax and wane mysteriously, because a twenty percent increase in dietary thiamine causes an eighty percent improvement in brain function and symptoms.  Thiamine interacts with all the other vitamins in some way.  Many other vitamins and their metabolic processes won't work without thiamine.  In Celiac Disease you are apt to be low in all the essential nutrients, not just thiamine, but thiamine deficiency symptoms may appear first. Talk to your dietician about eating a nutritionally dense gluten free diet.  Keep in mind that processed gluten free foods do not contain sufficient vitamins to be useful.  Processed gluten free foods are filled with saturated fats and excess fiber (that could explain your constipation).  Dairy products, milk and cheese can cause problems because Casein, the protein in dairy, causes the same autoimmune reaction that gluten does in some.  Your current restricted diet is dangerous to your health.  I followed the Autoimmune Protocol Diet (Dr. Sarah Ballantyne).  It's a Paleo diet that promotes intestinal healing.   Discuss with your doctors about correcting nutritional deficiencies as soon as possible.   Interesting reading... https://pubmed.ncbi.nlm.nih.gov/34165060/ https://pubmed.ncbi.nlm.nih.gov/21816221/#:~:text=Lipid-soluble thiamin precursors can,and attention deficit%2Fhyperactivity disorder.
    • max it
      Hi Ya All, Dr. just. Told me I have one celiac marker. I have been taking multiple blood test for thin Dr for years. Why couldn’t he have mentioned this! Anyway my functional med practitioner

      By max it · Posted

      I'll get to it. TY
    • cristiana
      Chest pain from celiac

      By cristiana · Posted

      My chest pain has been caused by costochondritis, as well as times when iron supplements has given me such bad bloating it has put pressure on my back and chest, and reflux can do the same. Also, along the lines of Wheatwacked's suggestion above, is it possible you had an injury to your chest/ribs way back that is being set off by either some sort of gastrointestinal bloating/discomfort? I distinctly remember really hurting a rib over forty years ago when I misjudged a wall and thought it was just behind me but in fact it wasn't.  I fell badly against the wall and I think I cracked a rib then.  For some strange reason I didn't tell anyone but I think had I gone to hospital an X-ray would have revealed a fracture. I think that rib has not been right since and I am sure that bloating makes it worse, as well as heavy lifting.
    • Dora77
      Ocd making gluten fears unmanageable. Need advice

      By Dora77 · Posted

      Sorry for the long post. I’m 18, and I was diagnosed with celiac disease and type 1 diabetes (T1D). My transglutaminase IgA was >128 U/mL, EMA IgA positive twice, and I’m HLA-DQ2 and DQ8 positive. I’ve been completely asymptomatic since diagnosis, even when I cheated with gluten sometimes in the past and used to eat out(2-5 years ago) I don’t get the typical celiac reactions, which makes it really hard to know when (or if) I’ve been glutened. But for the past year, I’ve been the most strict with my diet, and that’s also when a bunch of new issues started. I eat completely glutenfree, never eat out, dont eat food that says „may contain gluten“.   Current Health Problems • Floating, undigested stools for over a year now. Dont think its related to celiac as it was like this since im 17 and not 13-16( i got diagnosed at 13). • Chronic back pain started gradually, worsens with movement, lots of cracking/popping sounds. Been ongoing for a year now. First noticed in the gym. • Abdominal bulge on the right side, not painful but seems to be getting slightly bigger. Doctor didn’t find a hernia on ultrasound, but it was done lying down (I’ve read those can miss hernias). Noticed it like 6 months ago, couldve been there longer. • extremely dry and mildly swollen hands (this started before I started excessive hand-washing), and bloated face. • Signs of inattentive ADHD (noticed over the past 3 years), now combined with severe OCD focused on contamination and cross-contact. • Growth/puberty seemed to started after going gluten-free. Before that I was not developing. Dont know if any of these are because of celiac as my dad doesnt have those and he is a lot less strict gluten-free then me. I also had pancreatic elastase tested four times: values were 46 (very low), 236, 158, and 306 (normal). Gastroenterologist said one normal value is enough and I don’t have EPI. Family doctor prescribed Kreon anyway (after I pushed for it), and I just started taking 1 capsule (10,000 units) with meals 2 days ago, but couldn‘t see effects yet because I’ve been constipated the last few days. Maybe because of thyroid. I don’t have Hashimoto’s. No thyroid antibodies. But I took levothyroxine for slightly low FT4 levels. My thyroid levels fluctuated between borderline low and low-normal. And recently lowered my dose so that may have caused the constipating. I probably didn’t need it in the first place, and am thinking about stopping it soon.   Current Diet Right now, I only eat a very limited set of “safe” foods I prepare myself: • Gluten-free bread with tuna or cheese • Milk and cornflakes • gluten-free cookies/snacks • Bananas (the only fruit I trust right now) I rarely eat other fruits or vegetables, because I’m scared of contamination. My dad, who also has celiac but doesn’t care about CC, buys fruits, and he might’ve picked them up right after handling gluten bread. That makes me feel unsafe eating them. Even fruit at stores or markets feels risky because so many people with gluten on their hands touch them.   My Home Situation (Shared Kitchen) We’re a family of 5. Only my dad and I have celiac. He eats glutenfree but doesn’t care about CC and sometimes (but rarely) cheats. My mom and siblings eat gluten bread at every meal. My mom is honest (so if i ask her to be cautious, she most likely would try to), but doesn’t seem to understand how serious celiac is. She: • Stopped using gluten flour • only cooks gluten-free meals (but they still heat up gluten bread and also cook gluten noodles) • Keeps separate butter/jam/jars for me • Bought me a stainless steel pan Bu we didn’t replace old wooden utensils, cutting boards, or other pans. The new they bought me pan was even carried home in a shopping bag with gluten bread in it, which triggered my OCD. It also has a rubber handle and I’m scared it might still hold onto gluten. Even if it’s washed well, it’s stored next to other pans that were used for gluten food/bread. Our kitchen table is used for eating gluten bread daily. My mom wipes it but not with soap. I’m scared tiny particles remain. If she made gluten-free bread dough on a board at the table, I’d still worry about cross contmaination contamination even with something under the dough and on the table as at one point the dough would probably touch the table. So I stopped eating anything she makes.   I know OCD is making it worse, but I can’t tell how much of my fear is real and how much is anxiety. Examples: • I wash my hands 20–30 times a day — before eating, after touching anything at home or outside, after using my phone/laptop. • I don’t let others touch my phone, and I’m scared to use my laptop because friends at school or my brother (who eat gluten) have touched it. And it annoys me a lot when others touch my stuff and feels like it got contaminated and is unsafe instantly. • I stopped eating while using my phone or laptop, afraid of invisible gluten being on them. • I wash my hands after opening food packaging (since it was on store cashier belts where gluten food is placed). • I avoid sitting anywhere except my bed or one clean chair. • I won’t shake hands with anyone or walk past people eating gluten. • At school, when switching classes, I wash my hands before getting out my laptop, again before opening it, etc. • I open door knobs with my elbows instead my hands   Job Concerns (Powder Coating, Sandblasting, Etc.) I’m working a temporary job right now that involves: • Powder coating • Sandblasting • Wet spray painting • Anodizing There’s also a laboratory. I don’t need this job, and my OCD makes me believe that dust or air particles there might contain gluten somehow. Should I quit?   Doctors Haven’t Helped My family doctor told me: “Asymptomatic celiac isn’t serious, if you have no symptoms, your intestines won’t get damaged, so you don’t need a gluten-free diet.” I knew that was wrong, but he wasn’t open to listening. I just nodded and didn‘t argue. My gastroenterologist (who’s also a dietitian) said: „If your antibodies are negative, there’s no damage. It might even be okay to try small amounts of gluten later if antibodies stay negative.“ Also said, pepper that says “may contain gluten” is fine if it only contains pepper. She was more informed than my family doctor but didn’t seem to fully understand celiac either.   Questions I Need Help With 1. Is it realistically safe to eat food my mom cooks, if we get separate pans/ and boards even if gluten is still used in the same kitchen? There will always be low risk of cc chances like that she will still touch stuff that was touched by her and my siblings after they ate gluten. And as there are gluten eaters in the house and she also prepares and eats gluten. So would opening the fridge then getting the food and touching the food be okay? So basically what i am doing, washing my hands multiple times while preparing food, she would only wash it once before, then touch anything else (for example water tap or handles) that were touched with gluteny hands, then also touch the food. I dont know if I ever could feel safe, I could try telling her how important cc really is. And I trust her so she wouldnt lie to me then be careless about cc, but idk how safe it really can be if she and everyone else keeps eating gluten and touching stuff in the house after eating. 2. Do I need to worry about touching doorknobs, fridge handles, light switches, etc. that family members touched after eating gluten? What about public places like bus handles or school desks? Or like if i went to the gym, I would be touching stuff all the time, so there will be small amounts of gluten and those would get transferred on my phone if I touch my phone while in the gym. But I want to knos if it would be enough to do damage. 3. Is an endoscopy (without biopsy) enough to tell if my intestines are healed? I’d pay privately if it could help and if i dont get a refferal. Or do i need a biopsy? 4. Could my job (powder coating, sandblasting, etc.) expose me to gluten or damage my intestines through air/dust? 5. Do I need certified gluten-free toothpaste, hand soap, shampoo, or moisturizer? (For example: Vaseline and Colgate don’t contain gluten ingredients but say they can’t guarantee it’s gluten-free.) 6. Is spices like pepper with “may contain traces of gluten” safe if no gluten ingredients are listed? Or does everything need to be labeled gluten-free?  7. Is continuing to only eat my own food the better choice, or could I eventually go back to eating what my mom cooks if she’s careful? 8. is cutlery from dishwasher safe if there are stains? Stuff like knives is used for cutting gluten bread or fork for noodles etc. I often see stains which i dont know if its gluten or something else but our dish washer doesnt seem to make it completely clean. 9. I wash my hands multiple times while preparing food. Do i need to do the same when touching my phone. Like if i touch the fridge handle, I wash my hands then touch the phone. I dont eat while using my phone but i leave it on my bed and pillow and my face could come in contact with where it was.  10. Do i need to clean my phone or laptop if theyve been used by people who eat gluten? Even if no crumbs fall onto my keybaord, i mean because of invisible gluten on their fingers. 11. Does medication/supplements have to be strictly glutenfree? One company said they couldn‘t guarantee if their probiotics don’t contain traces of gluten.  12. I had bought supplements in the past, some of them say glutenfree and some of them dont(like the brand „NOW“ from iherb). I bought them and used them when i wasnt washing my hands so often, are they still safe? As I touched and opened them after touching door knobs, water taps etc. It was like a year ago when i bought those and even though i was eating gluten-free, I never worried about what i touch etc. I know this post is long. I’m just extremely overwhelmed. I’m trying to protect myself from long-term health damage, but the OCD is destroying my quality of life, and I honestly don’t know what’s a reasonable level of caution anymore. Thanks for reading.
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