Question in regards to antibodies

[Raquel2021]

For those if you who are experts  in this whole celiac disease journey.  If you are celiac antibodies are within normal range, does that mean you are in remission? Just asking because mine have become normal now but I am still experiencing pain almost 3 years after going gluten free.

Thanks. 

[Bebygirl01]

1 hour ago, Raquel2021 said:

For those if you who are experts  in this whole celiac disease journey.  If you are celiac antibodies are within normal range, does that mean you are in remission? Just asking because mine have become normal now but I am still experiencing pain almost 3 years after going gluten free.

Thanks. 

Well, it takes the gut 1.5 years to heal from Gluten, I don't test for it, there is no purpose in that for me. I am gluten free for life, but I noticed Dairy made me just as sick as gluten did, so when I went dairy free, all my allergies quit, I was no longer tired, my groin pain or (misshaped colon) went away and the sores on my body dissappeared.  When there is one autoimmune condition, there will be another and dairy is the biggest culprit after gluten. I hope you are taking a vegan gluten free probiotic (for life) and a good Digestive enzyme (I take "Pure Encapsulations" Digestive Enzymes Ultra as it eats up gluten, dairy, sugar, carbs, and fats in the gut. I just got glutened and exposed to dairy through a supplement I missed (for being contaminated by gluten and dairy) and I had a bad migraine. I took two of those and within 20 minutes I could finally eat. The gas is coming out today as that's what happens with both gluten and dairy. So if you are still suffering, I take it you are also allergic now to something else, try going dairy free for a week and see if you improve, dairy takes 48 hours to leave the system good enough to where most of the symptoms are gone, but it takes 10 days to 3 weeks to get it all out. It also takes the gut 1.5 years to heal from dairy, but if you take a good Digestive Enzyme, it will speed up that process. I believe you are also suffering from Dairy.

[trents]

Yes, you could be cross-reacting to another food whose proteins are similar to gluten such as dairy or oats or "meat glue".

[Raquel2021]

1 hour ago, Bebygirl01 said:

Well, it takes the gut 1.5 years to heal from Gluten, I don't test for it, there is no purpose in that for me. I am gluten free for life, but I noticed Dairy made me just as sick as gluten did, so when I went dairy free, all my allergies quit, I was no longer tired, my groin pain or (misshaped colon) went away and the sores on my body dissappeared.  When there is one autoimmune condition, there will be another and dairy is the biggest culprit after gluten. I hope you are taking a vegan gluten free probiotic (for life) and a good Digestive enzyme (I take "Pure Encapsulations" Digestive Enzymes Ultra as it eats up gluten, dairy, sugar, carbs, and fats in the gut. I just got glutened and exposed to dairy through a supplement I missed (for being contaminated by gluten and dairy) and I had a bad migraine. I took two of those and within 20 minutes I could finally eat. The gas is coming out today as that's what happens with both gluten and dairy. So if you are still suffering, I take it you are also allergic now to something else, try going dairy free for a week and see if you improve, dairy takes 48 hours to leave the system good enough to where most of the symptoms are gone, but it takes 10 days to 3 weeks to get it all out. It also takes the gut 1.5 years to heal from dairy, but if you take a good Digestive Enzyme, it will speed up that process. I believe you are also suffering from Dairy.

Thanks for your reply. I have been gluten free since December 2020 and dairy free since  September 2022 due to being diagnosed with Hashimotos as well and having some neurological symptoms.  I found going dairy free helped but did not notice a huge difference.  I also react to soy and eggs so I am very limited in what I can eat. I struggle to keep my weight on. I have tried to take a probiotic and it makes me sick. My celiac antibodies are normal. Basically I feel like anything that is hard to digest like beans causes me pain. I am also sugar free. Only consume the sugar in fruits.  

59 minutes ago, trents said:

Yes, you could be cross-reacting to another food whose proteins are similar to gluten such as dairy or oats or "meat glue".

Thank you. I don't consume dairy or oats

 The meat glue what is it? Thanks

[trents]

Google "meat glue and celiac disease". Here is a link from our own forum articles section: 

 

[Raquel2021]

42 minutes ago, trents said:

Google "meat glue and celiac disease". Here is a link from our own forum articles section: 

 

Thanks. I guess it never ends for celiacs.  Wow

[trents]

31 minutes ago, Raquel2021 said:

Thanks. I guess it never ends for celiacs.  Wow

No, it doesn't. When all of us first got diagnosed we thought it would be pretty straightforward and simple. We thought, "Okay. Giving up wheat products is going to be tough but I can do that and then I'll get on with life." It seemed rather simple. But we begin to find out that celiac disease has long fingers and many first cousins.

[Scott Adams]

Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months.

Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal.

This article may be helpful:

 

 

[Raquel2021]

4 hours ago, trents said:

No, it doesn't. When all of us first got diagnosed we thought it would be pretty straightforward and simple. We thought, "Okay. Giving up wheat products is going to be tough but I can do that and then I'll get on with life." It seemed rather simple. But we begin to find out that celiac disease has long fingers and many first cousins.

Exactly. I think even today celiac disease is poorly understood  and we have yet to learn a lot.

4 hours ago, Scott Adams said:

Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months.

Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal.

This article may be helpful:

 

 

Thank you. I am close to the 3 year mark and don't eat any dairy, soy or eggs as I react to all of those.

[Wheatwacked]

Do you have low vitamin D?

Vitamin D can modulate the innate and adaptive immune responses. Deficiency in vitamin D is associated with increased autoimmunity as well as an increased susceptibility to infection. 

Quote

 

     Surge of information on benefits of vitamin D

According to McCarthy, his target range is based upon several factors:

A lifeguard study that found vitamin D levels in the 70 ng/mL range up to 100 ng/mL (nature’s level) were associated with no adverse effects;

Data in patients with breast cancer showing a reduction in the incidence of new cancer with postulated 0 point at 80 ng/mL;

Colon cancer data showing a reduction in the incidence of new cancer (linear) with postulated 0 point at 75 ng/mL;

More than 200 polymorphisms of the vitamin D receptor requiring higher D levels to attain same desired outcomes;

When a patient misses dosing, an attained level of 80 ng/mL gives the patient an additional month of good levels off of vitamin D.

 

On 9/20/2023 at 6:45 PM, Raquel2021 said:

don't eat any dairy, soy or eggs as I react to all of those.

On 9/20/2023 at 11:34 AM, Raquel2021 said:

being diagnosed with Hashimotos as well and having some neurological symptoms.

On 9/20/2023 at 8:55 AM, Raquel2021 said:

I am still experiencing pain almost 3 years after going gluten free.

 

Two things come to mind that can be the cause. 

1. Iodine and Selinium for the Hashimoto and nerve problems consider deficient iodine intake. iodine deficiency is the major cause of hypothyroidism worldwide. Selenium is crucial to thyroid hormone production and function and is often insufficient in those with autoimmune thyroiditis. Serum selenium should be maintained above 80 ug/LSymptoms can include:
   1. Fatigue and sluggishness
   2. Increased sensitivity to cold
   3. Increased sleepiness
   4. Dry skin
   5. Constipation
   6. Muscle weakness
   7. Muscle aches, tenderness and stiffness
   8. Joint pain and stiffness
   9. Irregular or excessive menstrual bleeding
   10. Depression
   11. Problems with memory or concentration
   12. Swelling of the thyroid (goiter)
   13. A puffy face
   14. Brittle nails
   15. Hair loss
   16. Enlargement of the tongue
   17.  

2 Deficiency of choline intake.  Especially since you are avoiding eggs. Because phosphatidylcholine is found abundantly in mammalian cell membranes, some of the best sources of choline include eggs and organ meats.

low energy levels of fatigue

1. memory loss
2. cognitive decline
3. learning disabilities
4. muscle aches
5. nerve damage
6. mood changes or disorders
7. gall bladder dysfunction
8. non alcoholic fatty liver

 

On 9/20/2023 at 8:55 AM, Raquel2021 said:

If you are celiac antibodies are within normal range, does that mean you are in remission?

No such thing.  It does mean you are doing a good job at avoiding gluten.  Gluten is a poison to us.  With the right diet that fulfills all of your essential vitamin and mineral needs you may be able to tolerate gluten, but it is not remission, just "silent".  It will continue to do damage and you'll have other non-traditional symptoms that will be misdiagnosed as another new diagnosis.

 

[Bebygirl01]

On 9/20/2023 at 6:45 PM, Raquel2021 said:

Exactly. I think even today celiac disease is poorly understood  and we have yet to learn a lot.

Thank you. I am close to the 3 year mark and don't eat any dairy, soy or eggs as I react to all of those.

I used to be in such a state that I couldn't have eggs or coffee as I had pain in the upper abdomen area, now I have both without issues. For me, I only temporarily reacted to both until months after being 100% gluten and dairy free. I used to take Kratom during the day for extreme back pain and now it makes me very tired and in a daze. Once I was no longer malnurished and all my vitamin levels corrected, my back pain susided to just a small area that I can live with.  This malnutrition also caused anxiety, depression, and OCD, all of which is nonexistent now unless I accidentaly ingest either gluten or dairy.  I also had alopecia which was a vitamin D deficiency with me and the lack of moisture in my hair was a vitamin b7 deficiency. I used to take copious amounts of supplements, now my needs are much lower, but there will always be deficiencies such as B2 as I no longer eat grains, for example.

[Raquel2021]

2 hours ago, Wheatwacked said:

Do you have low vitamin D?

Vitamin D can modulate the innate and adaptive immune responses. Deficiency in vitamin D is associated with increased autoimmunity as well as an increased susceptibility to infection. 

 

Two things come to mind that can be the cause. 

1. Iodine and Selinium for the Hashimoto and nerve problems consider deficient iodine intake. iodine deficiency is the major cause of hypothyroidism worldwide. Selenium is crucial to thyroid hormone production and function and is often insufficient in those with autoimmune thyroiditis. Serum selenium should be maintained above 80 ug/LSymptoms can include:
   1. Fatigue and sluggishness
   2. Increased sensitivity to cold
   3. Increased sleepiness
   4. Dry skin
   5. Constipation
   6. Muscle weakness
   7. Muscle aches, tenderness and stiffness
   8. Joint pain and stiffness
   9. Irregular or excessive menstrual bleeding
   10. Depression
   11. Problems with memory or concentration
   12. Swelling of the thyroid (goiter)
   13. A puffy face
   14. Brittle nails
   15. Hair loss
   16. Enlargement of the tongue
   17.  

2 Deficiency of choline intake.  Especially since you are avoiding eggs. Because phosphatidylcholine is found abundantly in mammalian cell membranes, some of the best sources of choline include eggs and organ meats.

low energy levels of fatigue

1. memory loss
2. cognitive decline
3. learning disabilities
4. muscle aches
5. nerve damage
6. mood changes or disorders
7. gall bladder dysfunction
8. non alcoholic fatty liver

 

No such thing.  It does mean you are doing a good job at avoiding gluten.  Gluten is a poison to us.  With the right diet that fulfills all of your essential vitamin and mineral needs you may be able to tolerate gluten, but it is not remission, just "silent".  It will continue to do damage and you'll have other non-traditional symptoms that will be misdiagnosed as another new diagnosis.

 

I think what I meant to say by remission is: does having normal antibodies should equal no symptoms? My vitamin D levels is 96 just had it checked.  Normal is above 70 or something like that. I just had a visit with a neurologist who advised I don't have ms and my neurological symptoms are from being celiac 

[Raquel2021]

1 hour ago, Bebygirl01 said:

I used to be in such a state that I couldn't have eggs or coffee as I had pain in the upper abdomen area, now I have both without issues. For me, I only temporarily reacted to both until months after being 100% gluten and dairy free. I used to take Kratom during the day for extreme back pain and now it makes me very tired and in a daze. Once I was no longer malnurished and all my vitamin levels corrected, my back pain susided to just a small area that I can live with.  This malnutrition also caused anxiety, depression, and OCD, all of which is nonexistent now unless I accidentaly ingest either gluten or dairy.  I also had alopecia which was a vitamin D deficiency with me and the lack of moisture in my hair was a vitamin b7 deficiency. I used to take copious amounts of supplements, now my needs are much lower, but there will always be deficiencies such as B2 as I no longer eat grains, for example.

I can relate.  I am still experiencing pain every day so thinking about giving up rice as well as gluten free cardboard foods

[trents]

1 hour ago, Raquel2021 said:

I think what I meant to say by remission is: does having normal antibodies should equal no symptoms? My vitamin D levels is 96 just had it checked.  Normal is above 70 or something like that. I just had a visit with a neurologist who advised I don't have ms and my neurological symptoms are from being celiac 

Normal range of serum vitamin D is between 30 and 100 ng/mL