Do you ever feel like yourself again or heal completely

[Raquel2021]

Hello,

For those of you who have been diagnosed for a while.  Do you ever feel like yourself again? I have been gluten-free for 2.5 years now. Antibodies are in normal range but feel like I am getting worse. Tired, fatigued can't sleep, poor concentration.  Have exercise intolerance.  I take iron and b12 as they are low. Ferritin is always 5 normal range is 5 to 272. If I take a B complex I get severe insomnia so can only tolerate a low dose b12.  I am soo frustrated.  I can't eat out as I am very sensitive.  How do you cope? I have numbness/tingling on the right side of my face. I can't eat eggs or soy. Took dairy out in hopes it would help but notice no difference. 

Thank you

[Scott Adams]

Do you include oats in your diet? If so, perhaps exclude those for a while, as ~9% of celiacs cannot tolerate oats.

It does sound like you may have vitamin/mineral deficiencies caused by malabsorption, and nerve issues/damage is common and can create gluten ataxia. Have you tried taking the supplements in the morning after eating? If so, does this still cause you insomnia? Perhaps try taking melatonin before bed. The following two articles may be helpful:

 

 

 

[Raquel2021]

No oats here. I react to oats. Thanks for the articles. I tried taking the B complex right after breakfast and it still gave me insomnia.  I got tested for b vitamins and was still within normal range. Melatonin did not help. I appreciate your reply. Do you feel better after all these years? Maybe is too soon for me. 

[Scott Adams]

Yes, but my ataxia issues did not resolve for over 20 years, and not until I began additional supplementation.

[Raquel2021]

6 minutes ago, Scott Adams said:

Yes, but my ataxia issues did not resolve for over 20 years, and not until I began additional supplementation.

Wow. What extra supplements do you take?

[itarachiu]

Going gluten free just was half of the puzzle in my case. After almost 7 years of keep struggling with my health despite eating gluten free, I cut all carbs like grains, seeds, refined sugar, fructose, onion, garlic, dairy, seed oils and then I start to feel normal. No cheating!

Gut bacteria imbalance and leaky gut is common in celiacs.

6 months ago I couldn't tolerate not even half of an egg, today I eat 4 eggs, no issue. I can drink coffee again without gut cramps, I can eat high histamine foods again.

Eat more meat and the fat with it, most of so called healthy vegetables have toxins which your gut can't handle because it was never healed. Keep a food journal see what works and what doesn't. Carrots, zucchini, cucumber, ginger, turmeric, parsnip, pumpkin were fine for me even when I was at the worse of my life.

[knitty kitty]

2 hours ago, Raquel2021 said:

I tried taking the B complex right after breakfast and it still gave me insomnia.  I got tested for b vitamins and was still within normal range.

Blood levels are not an accurate measurement of vitamins in your body.  Most vitamins are used inside cells of organs.  The brain likes to keep a certain level in the blood to supply important organs like the brain and heart.  So the brain orders the cells to give up their vitamin stores in order to keep the blood homeostasis and supply the brain and heart.  So your blood may say "normal" levels, but you can have a functional deficiency because there's not enough vitamins inside cells where they are used to keep organs functioning properly. 

Try taking the B Complex again, and add tryptophan, a form of Niacin.  Your body needs tryptophan to make and work with melatonin.  Also take a magnesium glycinate supplement and Vitamin D.  Vitamin D deficiency is found in sleep disorders.  Replenishing Vitamin D to 80nMol/L should correct your insomnia.

Best wishes.

[cristiana]

I still occasionally get tingling in my face, oddly enough I had it the other day.  I was glutened in the past month, could be that.  But I also think I have a type of neuralgia because it can follow on a day when I've had the car window down, or been in wind. A tingling face can also be a type of migraine.  Tingling can also be caused by thyroid issues, I believe.  Perhaps it might be worth asking for a full thyroid panel to be done?

 

 

[Russ H]

6 hours ago, Raquel2021 said:

Hello,

For those of you who have been diagnosed for a while.  Do you ever feel like yourself again? I have been gluten-free for 2.5 years now. Antibodies are in normal range but feel like I am getting worse. Tired, fatigued can't sleep, poor concentration.  Have exercise intolerance.  I take iron and b12 as they are low. Ferritin is always 5 normal range is 5 to 272. If I take a B complex I get severe insomnia so can only tolerate a low dose b12.  I am soo frustrated.  I can't eat out as I am very sensitive.  How do you cope? I have numbness/tingling on the right side of my face. I can't eat eggs or soy. Took dairy out in hopes it would help but notice no difference. 

Thank you

I was ill for so long that I don't remember what normal is. I think I was ill for more than 40 years. I was diagnosed over 2 years ago. I was totally intolerant to dairy but this has now gone. I probably have a lingering dysbiosis and some foods such as beans cause a lot of bloating and burping.

Your iron seems very low. Do you take vitamin C with it?

[Sabaarya]

12 hours ago, Raquel2021 said:

Hello,

For those of you who have been diagnosed for a while.  Do you ever feel like yourself again? I have been gluten-free for 2.5 years now. Antibodies are in normal range but feel like I am getting worse. Tired, fatigued can't sleep, poor concentration.  Have exercise intolerance.  I take iron and b12 as they are low. Ferritin is always 5 normal range is 5 to 272. If I take a B complex I get severe insomnia so can only tolerate a low dose b12.  I am soo frustrated.  I can't eat out as I am very sensitive.  How do you cope? I have numbness/tingling on the right side of my face. I can't eat eggs or soy. Took dairy out in hopes it would help but notice no difference. 

Thank you

Hi. Even though the normal range for ferritin is 5-200,5 is very very low,that is the reason of constant fatigue and tingling situation. My ferritin level dropped after diagnose,before it used to be 50-60 and now it’s 6 and since my diet is not that rich in iron so I’m kind of struggling. But I’ve noticed improvement since taking iron supplements. My doctor wants it in 50’s.

[cristiana]

I couldn't agree more @Sabaarya.    A low number like that, although just normal, could cause the fatigue and tingling.   When my level was at 6 before diagnosis I had a lot more tingling, particularly in one leg.

I have to keep my iron low because of a haemoglobin issue, so it hovers around 25 at the moment.  However, for many years it was around 9.  Although that was at the time just within normal limits, according to the laboratory that took the sample, I saw a specialist another issue and he was appalled it was so low and said it should at least be at 40.  He organised an iron diffusion but because of my other health issue I had to decline.

Edited June 28, 2023 by cristiana

[Raquel2021]

20 hours ago, itarachiu said:

Going gluten free just was half of the puzzle in my case. After almost 7 years of keep struggling with my health despite eating gluten free, I cut all carbs like grains, seeds, refined sugar, fructose, onion, garlic, dairy, seed oils and then I start to feel normal. No cheating!

Gut bacteria imbalance and leaky gut is common in celiacs.

6 months ago I couldn't tolerate not even half of an egg, today I eat 4 eggs, no issue. I can drink coffee again without gut cramps, I can eat high histamine foods again.

Eat more meat and the fat with it, most of so called healthy vegetables have toxins which your gut can't handle because it was never healed. Keep a food journal see what works and what doesn't. Carrots, zucchini, cucumber, ginger, turmeric, parsnip, pumpkin were fine for me even when I was at the worse of my life.

Thanks so much. I am too trying all these things. Still trying to figure out what works best. I am sure I suffer from leaky gut. When I eat non organic fruits or vegetables I would get rashes. 

3 hours ago, cristiana said:

I couldn't agree more @Sabaarya.    A low number like that, although just normal, could cause the fatigue and tingling.   When my level was at 6 before diagnosis I had a lot more tingling, particularly in one leg.

I have to keep my iron low because of a haemoglobin issue, so it hovers around 25 at the moment.  However, for many years it was around 9.  Although that was at the time just within normal limits, according to the laboratory that took the sample, I saw a specialist another issue and he was appalled it was so low and said it should at least be at 40.  He organised an iron diffusion but because of my other health issue I had to decline.

Thank you. I have been taking iron supplements for over a year now. If I stop taking them my ferritin would drop even more. 

[Raquel2021]

10 hours ago, Sabaarya said:

Hi. Even though the normal range for ferritin is 5-200,5 is very very low,that is the reason of constant fatigue and tingling situation. My ferritin level dropped after diagnose,before it used to be 50-60 and now it’s 6 and since my diet is not that rich in iron so I’m kind of struggling. But I’ve noticed improvement since taking iron supplements. My doctor wants it in 50’s.

Thank you.  Taking iron supplements for over a year now

16 hours ago, Russ H said:

I was ill for so long that I don't remember what normal is. I think I was ill for more than 40 years. I was diagnosed over 2 years ago. I was totally intolerant to dairy but this has now gone. I probably have a lingering dysbiosis and some foods such as beans cause a lot of bloating and burping.

Your iron seems very low. Do you take vitamin C with it?

Thanks.  I cannot tolerate vitamin C or oranges or any citrics

19 hours ago, cristiana said:

I still occasionally get tingling in my face, oddly enough I had it the other day.  I was glutened in the past month, could be that.  But I also think I have a type of neuralgia because it can follow on a day when I've had the car window down, or been in wind. A tingling face can also be a type of migraine.  Tingling can also be caused by thyroid issues, I believe.  Perhaps it might be worth asking for a full thyroid panel to be done?

 

 

I have been told I have Hashimotos with normal thyroid function 

[Raquel2021]

20 hours ago, knitty kitty said:

Blood levels are not an accurate measurement of vitamins in your body.  Most vitamins are used inside cells of organs.  The brain likes to keep a certain level in the blood to supply important organs like the brain and heart.  So the brain orders the cells to give up their vitamin stores in order to keep the blood homeostasis and supply the brain and heart.  So your blood may say "normal" levels, but you can have a functional deficiency because there's not enough vitamins inside cells where they are used to keep organs functioning properly. 

Try taking the B Complex again, and add tryptophan, a form of Niacin.  Your body needs tryptophan to make and work with melatonin.  Also take a magnesium glycinate supplement and Vitamin D.  Vitamin D deficiency is found in sleep disorders.  Replenishing Vitamin D to 80nMol/L should correct your insomnia.

Best wishes.

Thank you 

I will try the B complex again 

[KathleenMK]

On 6/28/2023 at 12:18 AM, Sabaarya said:

Hi. Even though the normal range for ferritin is 5-200,5 is very very low,that is the reason of constant fatigue and tingling situation. My ferritin level dropped after diagnose,before it used to be 50-60 and now it’s 6 and since my diet is not that rich in iron so I’m kind of struggling. But I’ve noticed improvement since taking iron supplements. My doctor wants it in 50’s.

I had severe anemia and my hematology prescribed iron taken with vitamin c like orange juice first thing in morning and not eating for at least an hour because the calcium in your cereal and milk will keep you from absorbing the iron.  So there is some health benefits to the kosher diet of no milk and dairy in the same meal. Vitamin C help iron absorption. Calcium and magnesium  help relaxation so those are better before bedtime.  Hmmm maybe that's why ice cream taste better at night when I shouldn't be eating anything. Seriously you might try  the vitamin c and iron on empty stomach in the morning  and save calcium for later in the day.

[Scott Adams]

On 6/27/2023 at 10:34 AM, Raquel2021 said:

Wow. What extra supplements do you take?

Please see this post:

 

[Taradaktull]

On 6/27/2023 at 10:30 AM, Raquel2021 said:

Hello,

For those of you who have been diagnosed for a while.  Do you ever feel like yourself again? I have been gluten-free for 2.5 years now. Antibodies are in normal range but feel like I am getting worse. Tired, fatigued can't sleep, poor concentration.  Have exercise intolerance.  I take iron and b12 as they are low. Ferritin is always 5 normal range is 5 to 272. If I take a B complex I get severe insomnia so can only tolerate a low dose b12.  I am soo frustrated.  I can't eat out as I am very sensitive.  How do you cope? I have numbness/tingling on the right side of my face. I can't eat eggs or soy. Took dairy out in hopes it would help but notice no difference. 

Thank you

Hi. I have read it can take several years (up to 5) for adults to fully heal. Since going gluten free, I have developed a few food intolerances so I am figuring out what I can and cannot eat as I go along. I am working with a functional medicine nutritionist to figure out supplements. Apparently, magnesium levels are hard to measure and low levels can impact other vitamins and minerals. I also discovered I have sleep apnea which is contributing to the fatigue. Best of luck with figuring everything out.