Wondering. Could I be celiac?

[Scott Adams]

I've heard people waiting a week or two for their results, but can't really think of why it might take longer. I have Kaiser and they come back with nearly all test results remarkably fast, normally the same week, or a few days later.

[trents]

1-2 weeks I think. Usually they have to be sent off instead of processed locally. Do you have access online to your tests and labs or will you also have to wait for a physician appointment to get the results?

[RMJ]

I got my biopsy results in just a few days.  It was surprisingly fast. It does take some time to process the samples so they can be observed under a microscope.

[Killygirl]

3 hours ago, trents said:

1-2 weeks I think. Usually they have to be sent off instead of processed locally. Do you have access online to your tests and labs or will you also have to wait for a physician appointment to get the results?

Yes I do have access but they don’t post pathology results for 1 week after they are available, to avoid any unexpected surprises to patients without the support of their doctors. My GI specialist wrote on my discharge sheet that a phone call follow up (cause of Covid) to be arranged to discuss results. 

[Killygirl]

3 hours ago, RMJ said:

I got my biopsy results in just a few days.  It was surprisingly fast. It does take some time to process the samples so they can be observed under a microscope.

I think he told me he took 8 biopsies so it might take a little longer. And he biopsied the terminal ileum. 

[Killygirl]

I think I may have had celiacs for a very long time undiagnosed (if I have it). I worry that I may have neurological effects too because 1.5 years ago I had a sudden onset of severe vertigo without nausea. I had a CT scan which was normal but it took days to improve and I had trouble walking because the world was moving. Since then I have had poor balance (compared to before) and in the last few years my balance hasn’t been great to begin with. I do yoga regularly so I know it’s not from “aging and lack of use”. Also years ago I went through a period of 2-3 years of severe drenching night sweats (no it wasn’t menopause) and never knew why (I didn’t have other symptoms that would make me worried about NHL). Eventually the night sweats went away about 5 years ago. I always wondered if it was food related. And I have been battling severe fatigue for more than a decade. 

Thanks for listening everyone. 

[Killygirl]

Also during the time I had the night sweats I had several episodes of severe abdominal pain waking me from sleep and leading to vomiting and relieved eventually but noise bowel sounds and diarrhea. It was horrible. This happened over a period of a year or so. This was around 2012-2013. I had a colonoscopy at the time that was normal and nothing further done except a ttg IgA that had no detection of celiac whatsoever.  
Thank you members it is so nice to be able to talk to someone about these things. I have a tendency to push through any issues and be dismissive of my own health concerns.  

 

Just now, Killygirl said:

Also during the time I had the night sweats I had several episodes of severe abdominal pain waking me from sleep and leading to vomiting and relieved eventually but noisy bowel sounds and diarrhea. It was horrible. This happened over a period of a year or so. This was around 2012-2013. I had a colonoscopy at the time that was normal and nothing further done except a ttg IgA that had no detection of celiac whatsoever.  
Thank you members it is so nice to be able to talk to someone about these things. I have a tendency to push through any issues and be dismissive of my own health concerns.  

 

 

[Posterboy]

On 5/13/2021 at 9:34 PM, Killygirl said:

I think I may have had celiacs for a very long time undiagnosed (if I have it). I worry that I may have neurological effects too because 1.5 years ago I had a sudden onset of severe vertigo without nausea

Killygirl,

The articles below explain how both Thiamine and Magnesium deficiencies can lead to Vertigo.

Magnesium is used in 70% of Thiamine’s enzymic pathway needed by the body to utilize B1….

So, we can’t use Thiamine without Magnesium and a why  a deficiency in either Magnesium or Thiamine will lead to Vertigo problems….

Entitled "Rare cause of central vertigo of metabolic origin due to vitamin B1 deficiency: Case Report"

Livestrong article "About Magnesium Deficiency & Vertigo"

https://www.livestrong.com/article/519671-about-magnesium-deficiency-vertigo/

Also read this Posterboy blog post when you get the time....it explains why B-Vitamin deficiencies especially Vitamin B1 (Thiamine) Vitamin B2 (Riboflavin) and Vitamin B3 (Niacin) deficiencies in Celiac disease develop and why it matters...

Note: It is a little long....but you won't read a more thorough post/article about the subject.

Go back and read it a 2nd or 3rd time if you need too.....it will probably be like drinking from a "Fire Hose" the first time you read it.

I have put my "Bread Upon the Water" in the hopes that it will come back to me someday (and you and many others will be helped!!! PTL

Ecclesiastes 11:1-6

1) Cast thy bread upon the waters: for thou shalt find it after many days.

2)  Give a portion to seven, and also to eight;....(Forum)

I have shared in the hope that other might be helped from my experience.

This is about trying to educating others...."For to Educate is to Free"

2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included.

Posterboy by the Grace of God,

[Killygirl]

Thank you so much Posterboy. This is so helpful. 

[Killygirl]

New Question:  Any recommendations for other vitamin/mineral tests to request beyond B12 & Mg?  Thanks!

[Posterboy]

1 hour ago, Killygirl said:

New Question:  Any recommendations for other vitamin/mineral tests to request beyond B12 & Mg?  Thanks!

KillyGirl,

Your FAT Soluble Vitamins will usually be low like ADEK, other other Minerals like Iron and Zinc etc. and most of your B-Vitamins.

Here is some research about it

Entitled "Appropriate nutrient supplementation in Celiac disease"

https://pubmed.ncbi.nlm.nih.gov/24195595/

I wrote a Posterblog post about how man Micronutrients are low  in Celiac's.

Maybe it will help you to read it.

It was a surprising finding by the Mayo Clinic at the time....but sure to read the comments....that is where all the nitty gritty details are....

Most believe your Vitamin deficiencies will get better in first year except Vitamin A and Thiamine but I found supplementing was a key for me.....until my Villi had completely healed.

I like to think it accelerates somebodies recovery (or at least) improves lingering symptom's not directly tied to gluten.

Because each Vitamin/Mineral deficiency has it's OWN Symptomology ......the only to distinguish the Celiac symptom from the Vitamin Symptom is to supplement.

Here is another Posterboy blog post that might help you when it comes to supplementing.

I have been an advocate of supplementing from the beginning because I found Magnesium helped my fatigue and Niacinamide helped my lingering GI problems.

When you get low in Stomach Acid.....you can NO longer dissolve your Minerals and your Small Intestine can no longer absorb them.

Here is another Posterboy blog post about this connection.

If you want or need to read other Posterbog posts to help you understand more about this important topic just go to to the top of any of the blog posts and click on the Posterboy blog post at the top of the blog posts and 20+ blog posts will come up....for you to scan.  Read the one's that pique your interest the most!

I wrote them to help others still on their journey!

Good luck on your continued journey!

Again I say  2 Timothy 2:7 “Consider what I say; and the Lord give thee understanding in all things”

As always, I hope this is helpful but it is not medical advice.

Posterboy by the Grace of God,

[Killygirl]

Ok thank you again!

[trents]

There are big question marks about the reliability of vitamin and mineral level testing since it measures serum levels rather than what is actually being taken up into the tissues. I think it's better to look for the symptoms of vitamin and mineral deficiency. Supplement when in question. Taking large doses of B vitamins cannot hurt you since they are water soluble. Fat soluble vitamins need a little more caution but most health experts say it's safe to take D3 supplements of around 2000 IU per day.

[Killygirl]

UPDATE:  I just received a call from my family doctor who had the results of all my biopsies. I am (devastated) to report that they were all NORMAL. I don’t mean to be ungrateful for my health and I am so sad because I thought I found the answer to why I am so exhausted etc. I can’t believe I am actually crying over good results. 
 

A huge thank you to all the responders to my post and for the support you have provided. I hope you do not feel I have wasted everyone’s time. 
 

Best wishes. 

[RMJ]

I’m sorry that you don’t have a cause for your health troubles.  I hope your doctors will keep looking.  I doubt that anyone will feel you have wasted their time - we are pretty sympathetic to difficult-to-diagnose health problems.

[Killygirl]

I am surprised that nothing was found because he definitely told me he saw “lots of edema”. Scheduled a follow up (which they don’t do if normal)
and did not categorize it as a “normal endoscopy” on the discharge form he gave me (although there was a section to check for normal). I will get a chance to speak with him so I will ask about this of course. 

[trents]

So then, you must have NCGI (non celiac gluten intolerance). Many of the same symptoms and many of the same long term health risks but without damage to the villi. The antidote is the same, however. Total avoidance of gluten for life.

But please clarify. Were you consuming a significant amount of gluten daily for at least two weeks prior to the biopsy? It's a long thread and I forget what has been said about that.

[Scott Adams]

2 hours ago, Killygirl said:

UPDATE:  I just received a call from my family doctor who had the results of all my biopsies. I am (devastated) to report that they were all NORMAL. I don’t mean to be ungrateful for my health and I am so sad because I thought I found the answer to why I am so exhausted etc. I can’t believe I am actually crying over good results. 
 

A huge thank you to all the responders to my post and for the support you have provided. I hope you do not feel I have wasted everyone’s time. 
 

Best wishes. 

So ruling out celiac disease doesn't rule out gluten sensitivity, unfortunately. It's still possible you're symptoms are caused by gluten at @trents mentioned, so it might still be worth trying out the gluten-free diet to see if it offers relief.

[Killygirl]

1 hour ago, trents said:

So then, you must have NCGI (non celiac gluten intolerance). Many of the same symptoms and many of the same long term health risks but without damage to the villi. The antidote is the same, however. Total avoidance of gluten for life.

But please clarify. Were you consuming a significant amount of gluten daily for at least two weeks prior to the biopsy? It's a long thread and I forget what has been said about that.

I have not ever restricted gluten so I would assume so. 

My concern is about the iron deficiency especially. I don’t think a gluten intolerance would cause nutritional deficiency would it, if there is no damage to the small bowel?

[Posterboy]

1 hour ago, Killygirl said:

My concern is about the iron deficiency especially. I don’t think a gluten intolerance would cause nutritional deficiency would it, if there is no damage to the small bowel?

Killygirl,

The IDA can be from low stomach acid.

Low stomach acid I think is the root cause of many of the GI problems people end up having....

I don't have a lot of time tonight.....I have been running errands but I wanted to encourage youu.

When I treated my low stomach acid occurring with my Celiac disease many of my lingering GI issues got better.

Here is the research on Low/NO stomach acid being an independent cause of Iron deficiency anemia.

Entitled "Is achlorhydria (NO Stomach Acid) a cause of iron deficiency anemia?" and the answer was emphatically YES!

https://pubmed.ncbi.nlm.nih.gov/25994564/

I have written/talked about it the most on this forum because I found treating my Low/NO stomach acid going undiagnosed/misdiagnosed truly helped me!

 Maybe it will help you to read some my blog posts about it.

I am linking this one.....because it has a lot of helpful comments in it.....that you can learn a lot from...

Taking Thiamine (as Benfotiamine) and Magnesium as Glycinate will help your Fatigue issues!

Taking a B-Complex can help your IDA because the B-Vitamins of B1, B2 an B3 all have been shown to be involved in Iron absorption as well as Beta Carotene and Copper.....

But start with a B-Complex, the Benfotiamine and Magnesium with Meals  to see if you don't begin to feel better in a couple months......

I think you will find you truly start to feel better after the first month or so....

Usually it takes a full 3 months to fill up your liver with all the B-Vitamins it can store!

See my other Posterboy blog posts at this link if you want to read more blog posts than I have linked above.

You can always search Celiac.com for the Posterboy and many other helpful threads will come up....if you want to research low stomach acid anymore.

A good self test is the "Baking Soda Test".

Explained here in detail by Dr. Jockers....Baking Soda Test is at bottom of this online article...

https://drjockers.com/10-ways-improve-stomach-acid-levels/ 

Note: on taking a B-Complex.....after a month or so your Urine will begin to glow this is a good sign.....because your body is now bypassing Riboflavin aka Vitamin B2 through your kidneys....

From this point on.....expect your Iron Deficiency Anemia to get better....

Here is a nice article about it...(Riboflavin)

Doctor's  have forgotten the role Riboflavin plays in Iron deficiency anemia......It is good for you thyroid as well.....which can also explain your fatigue issues because doctor's don't study Vitamins and Minerals IE Nutrition today!

https://www.ncbi.nlm.nih.gov/books/NBK470460/

quoting from the above article on Riboflavin....

"Riboflavin has a yellow-green fluorescent pigment, which causes urine to turn yellow, indicating the body is absorbing riboflavin. Riboflavin also helps convert tryptophan to niacin, which activates vitamin B6. Some preventable diseases manageable with adequate riboflavin are anemia, cataracts, migraines, and thyroid dysfunction."

Good luck on  your continued journey!

I hope this is helpful but it is not medical advice.

Posterboy,

[trents]

Have you been checked for pernicious anemia, caused by lacking something called "intrinsic factor" which prevents the assimilation of B12? B12 is necessary for iron uptake.

[Killygirl]

Thank you.

 I don’t have pernicious anemia. My B12 levels are adequate at this time. 

[Scott Adams]

18 hours ago, Killygirl said:

I have not ever restricted gluten so I would assume so. 

My concern is about the iron deficiency especially. I don’t think a gluten intolerance would cause nutritional deficiency would it, if there is no damage to the small bowel?

My understanding is that when they do an endoscopy they take 3-10 samples from a small area of your gut, which, if stretched out, would cover an area the size of a football field. So no, I don't think you get a full picture of your gut health when you do an endoscopy. They could simply miss an area that has damage, or the damage isn't visible so they don't sample the damaged area.