Looking for Insight

[Djd27]

Hi Everyone!

I’m normally not one to post in discussion boards, but I’m starting to drive myself crazy.. 

My current doctor is less than awesome so I’m waiting to get established with a new PCP and hoping they’re more helpful. I have thyroid disease (hypothyroidism) that is in check, but from what I’ve heard, I’m on a really high dosage of Synthroid to treat it. I also still have a lot of symptoms:

Super irregular consistency of BMs

Go anywhere from 3-8x a day

Very Gassy ALL the time

Reflux

Cramps in my sides

Some days I feel super disoriented, almost like I’m drunk but I haven’t had anything to drink

Randomly, my arms or legs will fall asleep (this could be in the middle of a workout though, not just like your foot falling asleep when you’ve sat for too long)

I’m also moody and could nap every single day if I had someone to watch my kids….

 

I realize that these could all be unrelated, but as I’ve read more, it sounds like these could be symptoms of Celiac Disease? I currently follow a plant based diet, so I’m not avoiding gluten, but it’s also not something I eat a ton of, so I’m wondering if this is why some days I feel worse than others? I workout 6x a week and most people would consider my diet very healthy, so I feel like there has to be something going on. 
Has anyone else had a similar experience? I’m also not sure if I should be making an effort to eat more gluten for the testing to be accurate or if not making an effort not to eat gluten is enough? 
 

Thanks in advance! 

 

[trents]

45 minutes ago, Djd27 said:

Hi Everyone!

I’m normally not one to post in discussion boards, but I’m starting to drive myself crazy.. 

My current doctor is less than awesome so I’m waiting to get established with a new PCP and hoping they’re more helpful. I have thyroid disease (hypothyroidism) that is in check, but from what I’ve heard, I’m on a really high dosage of Synthroid to treat it. I also still have a lot of symptoms:

Super irregular consistency of BMs

Go anywhere from 3-8x a day

Very Gassy ALL the time

Reflux

Cramps in my sides

Some days I feel super disoriented, almost like I’m drunk but I haven’t had anything to drink

Randomly, my arms or legs will fall asleep (this could be in the middle of a workout though, not just like your foot falling asleep when you’ve sat for too long)

I’m also moody and could nap every single day if I had someone to watch my kids….

 

I realize that these could all be unrelated, but as I’ve read more, it sounds like these could be symptoms of Celiac Disease? I currently follow a plant based diet, so I’m not avoiding gluten, but it’s also not something I eat a ton of, so I’m wondering if this is why some days I feel worse than others? I workout 6x a week and most people would consider my diet very healthy, so I feel like there has to be something going on. 
Has anyone else had a similar experience? I’m also not sure if I should be making an effort to eat more gluten for the testing to be accurate or if not making an effort not to eat gluten is enough? 
 

Thanks in advance! 

 

Nearly all of the symptoms you list are common to celiac disease. The "super disoriented" feeling sounds like what we call brain fog. Neurological manifestations of celiac disease are common and variable. Your arms and legs randomly falling asleep sounds like it could have a neurological base.

The pretest gluten challenge guidelines are the daily consumption of an amount of gluten equivalent to two slices of wheat bread for 6-8 weeks before the serology antibody draw and for at least two weeks before an endoscopy/biopsy.

If you do have celiac disease, your current low gluten diet is giving you enough gluten to keep the gut inflammation going but probably not enough to give valid test results.

You may also have non celiac gluten sensitivity for which there currently is no test per se. NCGS does not damage the small bowel villi as does celiac disease and it may not produce serum antibodies as does celiac disease so the persistence of celiac-like symptoms in the face of negative testing is how NGGS is diagnosed.

[cristiana]

Hello Djd27

I echo Trents' advice.  

Before diagnosis I would wake up with completely numb arms,  and walked around much of the day with tingling in my left leg.   I had diarrhea, cramps, brain fog.  My mood was also affected - I had very severe anxiety, the likes of which I had never experienced before - so much so that I had to google the symptoms to realise that was what it was!  Exam nerves - nothing like it!  This was anxiety on a whole new level. 

The arm numbness was diagnosed as ulnar compression which improved gradually over time, when I went gluten free and started to supplement iron and B12 under medical supervision.  The tingling leg is much less of a problem now but I still get it occasionally, not sure why.

Regarding supplementation - it would be good to find out if you are suffering any deficiencies, which is very common with coeliac disease.   If you are advised to supplement, make sure your levels are checked from time to time because overdoing iron and other supplements can be dangerous.

 

 

 

 

 

 

Edited September 14, 2021 by cristiana

[ERB]

I hope that you have gotten some real help that led to relief!  I have not been diagnosed with celiac disease, but was advised that I have IBS, fibromyalgia, migraines, arthritis, and bursitis (the bursitis since childhood), and to go on a gluten-free diet.  I have had a few of your symptoms, where I every now and then have an "attack" of horrible stomach cramps, nausea, chills, and long times in the bathroom.  My symptoms are no longer as severe as they used to be, and are not as severe as what you have experienced.  At one point years ago, I lost the ability to eat basically ANYTHING without distress. I saw a naturopath and ended up eating a very limited diet, taking a long list of supplements, including charcoal tablets, and was diagnosed with systemic yeast infection.   This regimen was helpful! I have found that drinking extra water has helped me a lot.  I also have several supplements that I take that have helped me.  I am often gassy.  Wondering if anyone has difficulty with this particular list of foods that I cannot tolerate:  iceberg lettuce, all melons, cucumbers, citrus juices (except for pineapple), fenugreek so therefore can't do curry anymore), and anything spicy.  Also cannot tolerate wine (or beer, although I never liked beer anyway), but can do drinks with liquor (apparently less yeast than wine).  This combination is very strange and some of the sensitivities do not make sense to me! I do understand the problems with wine (apparently too much yeast).  I am one of 3 children (sisters), and one of my sisters had some of these digestive problems, but I am the only one in my family with this strange list.  My parents could basically eat and drink anything, although there was a banana allergy (?) that my father and some of his siblings had. I would appreciate any feedback!

[trents]

40 minutes ago, ERB said:

I hope that you have gotten some real help that led to relief!  I have not been diagnosed with celiac disease, but was advised that I have IBS, fibromyalgia, migraines, arthritis, and bursitis (the bursitis since childhood), and to go on a gluten-free diet.  I have had a few of your symptoms, where I every now and then have an "attack" of horrible stomach cramps, nausea, chills, and long times in the bathroom.  My symptoms are no longer as severe as they used to be, and are not as severe as what you have experienced.  At one point years ago, I lost the ability to eat basically ANYTHING without distress. I saw a naturopath and ended up eating a very limited diet, taking a long list of supplements, including charcoal tablets, and was diagnosed with systemic yeast infection.   This regimen was helpful! I have found that drinking extra water has helped me a lot.  I also have several supplements that I take that have helped me.  I am often gassy.  Wondering if anyone has difficulty with this particular list of foods that I cannot tolerate:  iceberg lettuce, all melons, cucumbers, citrus juices (except for pineapple), fenugreek so therefore can't do curry anymore), and anything spicy.  Also cannot tolerate wine (or beer, although I never liked beer anyway), but can do drinks with liquor (apparently less yeast than wine).  This combination is very strange and some of the sensitivities do not make sense to me! I do understand the problems with wine (apparently too much yeast).  I am one of 3 children (sisters), and one of my sisters had some of these digestive problems, but I am the only one in my family with this strange list.  My parents could basically eat and drink anything, although there was a banana allergy (?) that my father and some of his siblings had. I would appreciate any feedback!

Have you been tested for celiac disease? Either with blood antibody tests that are specific for celiac disease or by biopsy of the small bowel lining? I would also suggest you look into histamine intolerance and SIBO.

[knitty kitty]

@Djd27,

Has your B12 level been checked recently?  How about your Vitamin D level?  Low B12 and low Vitamin D can affect your thyroid.

Vegetarian diets are notorious for being low in certain vitamins and minerals.

Here's some articles to provide more information....

Vitamin B12 deficiency common in primary hypothyroidism

https://pubmed.ncbi.nlm.nih.gov/18655403/

Vitamin B12 and Vitamin D Levels in Patients with Autoimmune Hypothyroidism and Their Correlation with Anti-Thyroid Peroxidase Antibodies

https://pubmed.ncbi.nlm.nih.gov/31779003/

And...

https://theconversation.com/have-you-gone-vegan-keep-an-eye-on-these-4-nutrients-107708

And...

What are the symptoms of vitamin B-12 deficiency?

https://www.medicalnewstoday.com/articles/324265

 

Many of the symptoms you described are the same as B12 deficiency symptoms.

Hope this helps!

[Djd27]

15 minutes ago, knitty kitty said:

@Djd27,

Has your B12 level been checked recently?  How about your Vitamin D level?  Low B12 and low Vitamin D can affect your thyroid.

Vegetarian diets are notorious for being low in certain vitamins and minerals.

Here's some articles to provide more information....

Vitamin B12 deficiency common in primary hypothyroidism

https://pubmed.ncbi.nlm.nih.gov/18655403/

Vitamin B12 and Vitamin D Levels in Patients with Autoimmune Hypothyroidism and Their Correlation with Anti-Thyroid Peroxidase Antibodies

https://pubmed.ncbi.nlm.nih.gov/31779003/

And...

https://theconversation.com/have-you-gone-vegan-keep-an-eye-on-these-4-nutrients-107708

And...

What are the symptoms of vitamin B-12 deficiency?

https://www.medicalnewstoday.com/articles/324265

 

Many of the symptoms you described are the same as B12 deficiency symptoms.

Hope this helps!

This is super interesting!! Thanks for all the links! I’m going to see a GI doc in a few weeks and hopefully they’ll test those levels too. I’m adding it to my list of things to ask about now.
I do take a multivitamin that is supposed to be giving me 100% of my daily value for B12 and Vitamin D and I eat some food that includes these too. The deficiency could def be the issue but I’m thinking there has to be an underlying cause for my body not absorbing the nutrients if I’m deficient enough to have all of these side affects. I’m looking forward to figuring it out whatever it is!

[Djd27]

On 9/14/2021 at 4:37 PM, cristiana said:

Hello Djd27

I echo Trents' advice.  

Before diagnosis I would wake up with completely numb arms,  and walked around much of the day with tingling in my left leg.   I had diarrhea, cramps, brain fog.  My mood was also affected - I had very severe anxiety, the likes of which I had never experienced before - so much so that I had to google the symptoms to realise that was what it was!  Exam nerves - nothing like it!  This was anxiety on a whole new level. 

The arm numbness was diagnosed as ulnar compression which improved gradually over time, when I went gluten free and started to supplement iron and B12 under medical supervision.  The tingling leg is much less of a problem now but I still get it occasionally, not sure why.

Regarding supplementation - it would be good to find out if you are suffering any deficiencies, which is very common with coeliac disease.   If you are advised to supplement, make sure your levels are checked from time to time because overdoing iron and other supplements can be dangerous.

 

 

 

 

 

 

Thank you so much for your input!! I do take a multivitamin but from what others are saying, maybe that’s not enough? I’m looking forward to getting more testing done and getting some answers.

[trents]

8 minutes ago, Djd27 said:

This is super interesting!! Thanks for all the links! I’m going to see a GI doc in a few weeks and hopefully they’ll test those levels too. I’m adding it to my list of things to ask about now.
I do take a multivitamin that is supposed to be giving me 100% of my daily value for B12 and Vitamin D and I eat some food that includes these too. The deficiency could def be the issue but I’m thinking there has to be an underlying cause for my body not absorbing the nutrients if I’m deficient enough to have all of these side affects. I’m looking forward to figuring it out whatever it is!

I would add to that a high potency, gluten free B-complex. But if you are having vitamin levels checked you need to be off of vitamin supplements for at least two weeks. Some deficiencies are masked when you are on supplements. 

[GodsGal]

5 hours ago, ERB said:

I hope that you have gotten some real help that led to relief!  I have not been diagnosed with celiac disease, but was advised that I have IBS, fibromyalgia, migraines, arthritis, and bursitis (the bursitis since childhood), and to go on a gluten-free diet.  I have had a few of your symptoms, where I every now and then have an "attack" of horrible stomach cramps, nausea, chills, and long times in the bathroom.  My symptoms are no longer as severe as they used to be, and are not as severe as what you have experienced.  At one point years ago, I lost the ability to eat basically ANYTHING without distress. I saw a naturopath and ended up eating a very limited diet, taking a long list of supplements, including charcoal tablets, and was diagnosed with systemic yeast infection.   This regimen was helpful! I have found that drinking extra water has helped me a lot.  I also have several supplements that I take that have helped me.  I am often gassy.  Wondering if anyone has difficulty with this particular list of foods that I cannot tolerate:  iceberg lettuce, all melons, cucumbers, citrus juices (except for pineapple), fenugreek so therefore can't do curry anymore), and anything spicy.  Also cannot tolerate wine (or beer, although I never liked beer anyway), but can do drinks with liquor (apparently less yeast than wine).  This combination is very strange and some of the sensitivities do not make sense to me! I do understand the problems with wine (apparently too much yeast).  I am one of 3 children (sisters), and one of my sisters had some of these digestive problems, but I am the only one in my family with this strange list.  My parents could basically eat and drink anything, although there was a banana allergy (?) that my father and some of his siblings had. I would appreciate any feedback!

Iceberg lettuce is terrible for me. I'm doing better with cucumbers since going gluten free.

[ERB]

5 hours ago, trents said:

Have you been tested for celiac disease? Either with blood antibody tests that are specific for celiac disease or by biopsy of the small bowel lining? I would also suggest you look into histamine intolerance and SIBO.

I have not, and will discuss with my doctor.  Thanks!

[Djd27]

1 hour ago, trents said:

I would add to that a high potency, gluten free B-complex. But if you are having vitamin levels checked you need to be off of vitamin supplements for at least two weeks. Some deficiencies are masked when you are on supplements. 

Also good to know!! It’s crazy that doctors don’t tell you all of this stuff in advance.. Clearly you can find it online, but I’ve talked to so many people who were screened for celiac and no one told them they had to be eating gluten for 6 weeks before. I’ve had providers check some vitamin levels in the past too and never have I been told to stop taking my daily ones.

[trents]

22 minutes ago, Djd27 said:

Also good to know!! It’s crazy that doctors don’t tell you all of this stuff in advance.. Clearly you can find it online, but I’ve talked to so many people who were screened for celiac and no one told them they had to be eating gluten for 6 weeks before. I’ve had providers check some vitamin levels in the past too and never have I been told to stop taking my daily ones.

They don't tell you these things because either they don't know enough to do that or they are skeptical about celiac disease in general and don't think it will make any difference.