Also having vision issues

[Katanya]

Want to try to reach out to @mgrant7209 what you described is exactly what I started going through five days ago. Just saw two opthamologists, a nuerologist and my medical doctor. My ALP is through the roof, now at over 160 and my C Reactive was high. I know my ALP always goes up when I consume gluten, but never had the Kaleidoscope flashes before, although I did have bad migraines from a dental implant issue where the struck the sinus nerve and it could have happened again but I am concerned that my non celiac gluten sensitivity has now turned into full blown Celiac. These eye issues are awful along with POTS and now crashing fatigue. Anything sound familiar to anyone? 

[trents]

Welcome to the forum, @Katanya! You can reach out to another forum member through the personal messaging tool. Just click on the envelope tool in the upper right corner of the page.

[Scott Adams]

If you look at their profile they haven't visited since 2016, so it's doubtful you'll reach them, but you have your own thread now on this topic.

Thank you for sharing your experience with us. It sounds like you've been through a lot lately, and dealing with health concerns can be overwhelming. It's great that you've consulted with multiple specialists to get a better understanding of what's going on.

The symptoms you're describing, such as kaleidoscope flashes, migraines, POTS, and fatigue, can indeed be associated with celiac disease or gluten sensitivity. Elevated ALP levels and high C Reactive Protein can also indicate inflammation in the body, which may be linked to gluten consumption in sensitive individuals.

Do you eat in restaurants? If so, your diet may not be 100% gluten-free.  This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):

 

 

[Katanya]

3 minutes ago, Scott Adams said:

If you look at their profile they haven't visited since 2016, so it's doubtful you'll reach them, but you have your own thread now on this topic.

Thank you for sharing your experience with us. It sounds like you've been through a lot lately, and dealing with health concerns can be overwhelming. It's great that you've consulted with multiple specialists to get a better understanding of what's going on.

The symptoms you're describing, such as kaleidoscope flashes, migraines, POTS, and fatigue, can indeed be associated with celiac disease or gluten sensitivity. Elevated ALP levels and high C Reactive Protein can also indicate inflammation in the body, which may be linked to gluten consumption in sensitive individuals.

Do you eat in restaurants? If so, your diet may not be 100% gluten-free.  This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):

 

 

I was wondering is it possible that I have gone from non celiac gluten sensitivity to full blown Celiac? Something has changed. I have been semi gluten free for over twenty years and I do eat sometimes in restaurants and I get a gluten free meal plan delivered to my house weekly as I have no time to cook, and never learned. I really do not want to put my body through eating a lot of gluten to test again. I got a positive blood test twenty years ago but negative scope. I am wondering if this new inflammation means my small intestine is swollen. I also just started to try to supplement with vitamins and electrolytes and was noticing a positive difference till I messed up on the gluten 

Just now, Katanya said:

I was wondering is it possible that I have gone from non celiac gluten sensitivity to full blown Celiac? Something has changed. I have been semi gluten free for over twenty years and I do eat sometimes in restaurants and I get a gluten free meal plan delivered to my house weekly as I have no time to cook, and never learned. I really do not want to put my body through eating a lot of gluten to test again. I got a positive blood test twenty years ago but negative scope. I am wondering if this new inflammation means my small intestine is swollen. I also just started to try to supplement with vitamins and electrolytes and was noticing a positive difference till I messed up on the gluten 

I wish there was some other way to test for Celiac 

[trents]

Yes, it is certainly possible that you have transitioned from NCGS (Non Celiac Gluten Sensitivity) to celiac disease. Some experts feel NCGS can be a precursor to celiac disease. I think it would be valuable for you to have celiac antibody testing redone even though you believe you are eating a low gluten diet. You may be getting more gluten than you realize.

[Scott Adams]

Here is an older doctor from an MD that supports this idea:

 

[Katanya]

Is that a blood test? I am fearful of doing the scope again that would mean more gluten again 

[trents]

Antibody testing is blood testing but you still have to be eating gluten for weeks ahead of time for it to be valid. The equivalent amount of gluten found in about 6 slices daily of wheat flour bread for at least two weeks. All celiac disease testing, whether  involves checking in some way for inflammation and/or the damage caused by it to the small bowel lining when you ingest gluten. If you remove gluten from the diet, the inflammation ceases to happen and there is nothing that can be detected by either kind of testing.

[Katanya]

I think I am still ingesting some because my ALP was high indicating swelling and inflammation. Does it have to be whole wheat bread or just white? I have eaten regular white for many years but have avoided whole wheat because it causes very bad cystic acne for me. 

[trents]

Makes no difference whether it is whole wheat or white. Whole wheat is white bread with the chaff not removed. That's not the main gluten containing part of t he wheat seed.

[Scott Adams]

54 minutes ago, Katanya said:

Is that a blood test? I am fearful of doing the scope again that would mean more gluten again 

If you know that gluten causes your symptoms, then there is no need to be retested unless you need a formal diagnosis for some reason. 

Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.

 

[Celiac16]

Thiamine supplementation (vitamin b1 ) really helped my POTS! I was also always having low blood pressure which it helped. Whenever I hear POTS, I suggest it bc my doctor says I’m borderline now and may no longer have it!

I previously had mild acidosis in my labs with elevated anion gap and lactic acid with shortness of breath and severe wooziness. Thiamine is a b vitamin and water soluble so it is a low risk thing to try. I was so desperate and kind is shocked that it corrected my symptoms…

[Katanya]

I have a question I want to try Thiamine supplementation as well due to POTS too but my alkaline phosphatate level is actually high so would that be dangerous?

[Scott Adams]

High levels of alkaline phosphatase (ALP) in the blood can have various causes, including liver or bone issues, and are not directly related to celiac disease or Thiamine (vitamin B1) supplementation. However, it's essential to consult with a healthcare professional before starting any new supplement regimen, especially if you have existing medical conditions or abnormal blood test results.

Here are a few considerations:

Liver Health: Elevated ALP levels may indicate liver problems. Thiamine supplementation is generally safe and unlikely to directly affect liver enzymes. However, your healthcare provider should evaluate your liver function before starting any new supplements, especially if you have liver issues.

Interaction with Medications: Thiamine supplementation is generally safe and well-tolerated, but it's essential to consider potential interactions with other medications or supplements you may be taking. Your healthcare provider can review your medications and advise accordingly.

Overall Health Assessment: High ALP levels may indicate various underlying health conditions. Before starting Thiamine or any other supplement, your healthcare provider may want to conduct a thorough assessment to understand the underlying cause of the elevated ALP levels.

Individualized Recommendations: Every individual is different, and what's suitable for one person may not be appropriate for another. 

[knitty kitty]

Hi, @Katanya,

How are you doing?  I hope you're feeling better. 

Did you decide to do a gluten challenge?  You could have an endoscopy and biopsy without a gluten challenge.  This would give a baseline with which to compare future endoscopies.  I believe a positive blood test for anti gluten antibodies is a positive for Celiac Disease.  In the early stages of celiac disease, there's little intestinal damage.

From what I've read, it's normal for enzymes like ALP to run high with exposure to gluten, but they return to normal after resuming a gluten free diet.  If they remain high, then checking for osteopenia is a good idea.  

Do talk to your doctor and nutritionist about supplementing with vitamins and minerals.  Checking for nutritional deficiencies is important because the gluten free diet can be low in some vitamins and minerals, especially if the gluten free diet has been followed for many years. 

Checking for nutritional deficiencies should be done before starting supplementation.  You will get false results if you are already taking vitamins.  Vitamins from food and supplements are absorbed in the intestines and circulate throughout the body in the bloodstream before being absorbed into tissues and organs.  Vitamin supplements will make the tests results falsely elevated, thus hiding a deficiency.  Be sure not to take supplements for eight to twelve weeks before testing.  Check with your doctor.

But, on the other hand, blood tests don't accurately measure the amount of vitamins stored inside cells in organs and tissues where they are utilized.  The body will scavenge vitamins stored inside cells in other organs in order to supply the brain and heart with the needed vitamins.  You can have a functional vitamin deficiency before there are any changes in blood levels.  

Me?  I started supplementing because my doctors were clueless about Celiac.  Taking all eight essential B vitamins in addition to high dose Thiamine and magnesium is important.  Thiamine needs magnesium to make essential enzymes.  Thiamine interacts with all the other B vitamins.  Thiamine also interacts with ALP.  ALP actually helps the absorption of Thiamine.  The B vitamins are nontoxic and water soluble, so any not absorbed is easily excreted in urine.   There's four fat soluble vitamins, A, D, E, and K.  Vitamin D regulates the immune system and can reduce inflammation which will help ALP go down.  And Vitamin C helps reduce inflammation, too.

Yes, Thiamine will help with POTS.  I was amazed how much better I felt after high dose Thiamine.  There's no harm in trying.  

References:

Liver abnormalities associated with celiac sprue. How common are they, what is their significance, and what do we do about them?

https://pubmed.ncbi.nlm.nih.gov/7665816/

Serum alkaline phosphatase in adult coeliac disease

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1552906/

Micronutrients Dietary Supplementation Advices for Celiac Patients on Long-Term Gluten-Free Diet with Good Compliance: A Review

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6681258/

Nutritional Imbalances in Adult Celiac Patients Following a Gluten-Free Diet

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8398893/

Micronutrient deficiencies are frequent in adult patients with and without celiac disease on a gluten-free diet, regardless of duration and adherence to the diet

https://pubmed.ncbi.nlm.nih.gov/36096056/

High Dose Thiamine

https://www.hormonesmatter.com/refeeding-syndrome-thiamine-deficiency/

The importance of thiamine (vitamin B1) in humans

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10568373/

High-dose vitamin B1 therapy prevents the development of experimental fatty liver driven by overnutrition

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7988776/