Malabsorption and non-celiac gluten sensitivity

[krystal16]

I have macular degeneration decades earlier than normal with no familial history.  The going theory is that my vitamin levels have been low for many years, supplementation barely helps.  I have modified my diet over the years to exclude refined garbage, minimize (though not exclude) gluten.  I have no real GI issues except bloating if I eat a lot of breads, pastas.  

I recently had the full Celiac Panel (and every other test for autoimmune diseases) and all came up normal.  No EGD, as bloodwork is fine.  This doctor said the bloodwork is accurate.  

My questions are: how accurate is the bloodwork?

Second question is, has anyone ever heard of non-celiac gluten sensitivity causing malabsorption to the degree that it affects serum blood levels chronically?

This doctor suggested a 3 month gluten-free trial and then repeat serum blood tests for vitamin levels to see if they improve.  I'm really stumping them why I have AMD.

[cyclinglady]

Welcome! 

First, I am sorry you are dealing with MD.  My Dad diagnosed recently but he is in his 80’s.  

Know that about 10% of celiacs are seronegative (never have positives on the celiac blood test, yet have intestinal damage).    You could be IgA deficient.   You also only need one positive on the complete celiac panel to move forward to an endoscopy. And....if you were not on a full gluten diet (like two pieces of bread daily for 8 to 12 months prior to the blood draw, your celiac antibodies tests could be negative.  All celiac testing, even an endoscopy,  requires you to be consuming gluten daily!  

 I would try to see a Gastroenterologist to find out the root cause of why you are not absorbing minerals and vitamins.  NCGS usually causes symptoms but it does not cause small intestinal damage.  

I though my own niece had celiac disease, turns out a pill camera caught Crohn’s Disease after she exhausted all scopes and blood tests.   She did not present with the usual Crohn’s symptoms, so her final diagnosis was shocking (took the fourth GI to figure this out).  Crohn’s, like celiac disease can cause malabsorption.  

You could try the gluten-free diet, but if you can, get a second opinion after obtaining all your records.  If you decide to do the diet, you must be super careful.  No oats, no eating out, and avoid processed foods while you are doing this experiment.  Research and research some more.  It is your best defense!  

 

Edited May 15, 2019 by cyclinglady

[krystal16]

Thanks for replying.  I'm in my early 40s and have been through just about every blood test and a few others to figure out the root cause of the malabsorption.   I am fairly sure the doctor did the test to see if I'm IgA deficient - can you tell me?  Here's the list of bloodwork I had done that day (there might be others not related to celiac disease, but I don't want to exclude an important one)
IGE Serum
IGA Serum (111 was my value, ref range 81-463)
IGG Subclasses, IGG Serum
Cardiolipin (IGG, IGM, IGA)
TISSUE TRANSGLUTAM ANTIBODY IGA/ IGA SERUM
TISSUE TRANSGLUTAM ANTIBODY IGG

Also, I was not on a gluten free diet leading up to the test, and the four/five weeks prior to the test, I deliberately ate what is an exceedingly large amount of gluten products (for me), which was at minimum the equivalent of 2 slices of bread per day.

Edited May 15, 2019 by krystal16

[GFinDC]

Hi,

Your serum IgA is fine, so you do make IgA antibodies.  That means the IgA antibody tests could be valid.

The antibody test require 8 to 12 weeks of eating gluten daily.  That gives the antibodies time to build up in the bloodstream.  Endoscopy needs 2 to 4 weeks of eating gluten daily.

It doesn't make sense not to do the endoscopy.  If your vitamin levels are low, either you are not getting enough of them in your diet or you are not absorbing them.  Or you have a condition that uses them up faster than normal.  Regardless, an endoscopy might find a cause for the malabsorption and should be done.  The low vitamin levels have to be caused by something.

If your doctor won't do an endoscopy I suggest finding a different doctor who will do it.

Over 80% of people with celiac disease are not diagnosed today.  That's partly because the testing is not perfect and also patients have so many various symptoms.  The final best test is always how your body reacts.  So if you can't get the endoscopy done, test yourself.  You do that by going strictly gluten-free for 3 months and see what changes.  Write down how you feel each day so you can track any changes.

If you don't get better in 3 months try going FODMAP free.  You may have a FODMAP problem as well.  FODMAPS have been found to cause symptoms in some people with NCGS.

While a diagnosis is nice to have, the main goal is to feel better and be healthier.  So how your body reacts to diet changes is as important as medical testing.  If you can't be healthy eating certain foods, then don't eat them.

Edited May 15, 2019 by GFinDC

[cyclinglady]

Well, you did not get the complete celiac panel.  The items missing are the DGP IgA, DGP IgG, and the EMA IgA.  For me personally, if my doctor had given me on the TTG tests, my diagnosis would have been missed.  You might be like me, you might be a seronegative celiac or you might not have celiac disease.  A gluten free diet is not going to cure you if have some other malabsorption issue.  It will not hurt or help.  Please get to a Gastroenterologist.  I am assuming you are working with a PCP/GP. 

[krystal16]

Thanks!  Im working with a specialist that deals with weird stuff that often stems from mitochondria and autoimmune.  15 years ago, I went through the gastro route but it was a nightmare because I kept getting brushed off (I had the EGD at my insistence and my GP begrudgingly referred me out).  I was not informed, though and the GI doc never said I had to be eating gluten.  Oops.

I am currently in the very slow wheel of doctors and specialists.  This guy is very open minded and had many other specialists that work to find solutions for weird cases like mine.  He is sharing my stuff with that GI /allergen doc before I go back.  

 

I'm glad to know the names of the additional tests that you mentioned.  Thanks so much.

[krystal16]

4 hours ago, GFinDC said:

Hi,

Your serum IgA is fine, so you do make IgA antibodies.  That means the IgA antibody tests could be valid.

The antibody test require 8 to 12 weeks of eating gluten daily.  That gives the antibodies time to build up in the bloodstream.  Endoscopy needs 2 to 4 weeks of eating gluten daily.

It doesn't make sense not to do the endoscopy.  If your vitamin levels are low, either you are not getting enough of them in your diet or you are not absorbing them.  Or you have a condition that uses them up faster than normal.  Regardless, an endoscopy might find a cause for the malabsorption and should be done.  The low vitamin levels have to be caused by something.

If your doctor won't do an endoscopy I suggest finding a different doctor who will do it.

Over 80% of people with celiac disease are not diagnosed today.  That's partly because the testing is not perfect and also patients have so many various symptoms.  The final best test is always how your body reacts.  So if you can't get the endoscopy done, test yourself.  You do that by going strictly gluten-free for 3 months and see what changes.  Write down how you feel each day so you can track any changes.

If you don't get better in 3 months try going FODMAP free.  You may have a FODMAP problem as well.  FODMAPS have been found to cause symptoms in some people with NCGS.

While a diagnosis is nice to have, the main goal is to feel better and be healthier.  So how your body reacts to diet changes is as important as medical testing.  If you can't be healthy eating certain foods, then don't eat them.

Thanks.  I recently looked into FODMAPs and I'm pretty sure that's not my issue.  2 days of gluten free and I feel vastly different (as always).  Many of the FODMAP foods are staples for me when gluten-free and feeling quite good.  I'm not saying that it can't be, but I'd be surprised if it were.  

3 months of gluten-free and then retest vitamin levels.  I've been supplementing and have a very diverse, pretty healthy diet, so it isn't intake.  I am in agreement and there is a finite amount of time before I just do what I want to feel better even without a specific diagnosis.

The blind thing is the only reason I'm playing the medical game again. It would be nice if they could pinpoint the reason so I can be proactive in slowing the progress.

[krystal16]

23 hours ago, GFinDC said:

  So if you can't get the endoscopy done, test yourself.  You do that by going strictly gluten-free for 3 months and see what changes.  Write down how you feel each day so you can track any changes.

I lost about 25 pounds a year ago by cutting back my carbs (and by default, lowering my gluten consumption to very low).  I added in gluten this past Thanksgiving for the bloodwork and never went back to the lower carbs (I primarily substitute with veggies, quinoa.  I still exercised, tracked my food, took my supplements.   I actually gained weight back, even though I was in a calorie deficit.

When I went gluten-free three days ago, I decided I'd stop tracking for a bit because going gluten-free and trying to lose weight at the same time just seemed overwhelming.  I'm doing my best to eat healthy foods, and I generally don't want to eat the processed gluten-free foods.

I lost 3# in the past 3 days without even trying (not hungry either).  I have eaten potatoes, chocolate, some ice cream, tons of fruit - so I'm certainly not low carb.  There's definitely something to this gluten-free thing for me.

[GFinDC]

Congrats on feeling better Krystal!   That makes the diet change worth while right there.

My brother has macular degeneration also.  He has T-2 diabetes and doesn't do a good job with his diet.  So he has lost some vision on both eyes and can't drive anymore.  I have a sister with macular degeneration also.  And our mom had it as well.  So does my uncle.  So it runs in the family for us.

I take my brother to the eye doctor for shots in his eyes every month.  He was getting Avastin shots a few years but they changed the med to something else recently.  The shots reduce the swelling in the eye.

My uncle takes Pservision AREDS supplements   He takes the new lower zinc version.

https://www.macular.org/treatments

Self-test chart for MD

https://www.macular.org/wp-content/uploads/2016/05/amslerchart.pdf

I think my brother might have better vision today if he had modified his diet better.  But he has a sweet tooth and a stubborn streak.  I am not sure where he got the stubborn streak.  Certainly not from any of us!

[krystal16]

I've been taking the AREDs for a while and doing the test regularly, as advised by my doctor.  I still have "dry" and decent vision, but it is progressing.  With taking that and several other suggested supplements, my zinc level is still quite low (as are others) which has led the doctors to speculate that poor absorption is the cause, since I have zero familial issues, no other diseases and I'm way too young for it.  

You are correct about your brother - diet and exercise do play a role in its progression.  I've modified mine to try and slow progression, but the persistent low vitamin levels are concerning to me.  I have had a decade and a half of doctors basically rolling their eyes at me for saying that I really suspect a gluten issue - and I let their disdain affect what I did.  Now that I have MD, other doctors are finally saying, "Gee, you have a problem and all roads are pointing to malabsorption, so we're sorta stumped since you tested negative for everything."

FYI, my serum blood levels of MANY things are literally right over the line of what medical doctors consider normal, so they all say there's no problem.  No one wanted to look at the larger picture until now.  

In three months' time when they test my serum blood levels, if those levels go up noticeably, I'll have my answer.  They can do with it what they want.  They aren't the ones whose sight is on the line. 

[GFinDC]

Amen Krystal.  They don't have to live with it, so shouldn't be the deciders of what you should eat.  We suggest people stick with a meat, veggies, nuts and eggs diet to start out.  No dairy at first as many of us can't digest it for a while.  Oats are also a problem for some so avoid them also.

If you can avoid the processed, baked gluten-free foods that's good.  Aldi does make some gluten-free wraps that are ok, and Mission makes corn tortillas that are gluten-free to sub for bread.  There is a thread on making microwave muffins on the forum also.

When you are shopping try to avoid any foods with more than 3 ingredients.  Whole foods are the best way to go.

[Ennis-TX]

Bit of thought on the malabsorption, it could have to do with the failure to break down and absorb the nutrients in food also.  I have some issues linked to my pancreas not working right and have to take large amounts of digestive enzymes in ratio to my diet macros (fats, protein, carbs).  Another thought is weak stomach acid not breaking down the foods completely that another of our members could inform you more on.

Perhaps see if taking a digestive enzyme fitting your diet (check realzymes) can improve the breaking down and absorption of nutrients, along with sublingual supplements for ease of absorption.  They also make Porcine-derived pancreas enzymes that if work could point out issues with it being related to something like EPI.

Celiac is odd in that it can lead to other AI issues and secondary damage anywhere with a rampant immune system. Intestines, Skin, Nervous system, brain, etc. 

[krystal16]

On 5/15/2019 at 7:42 AM, GFinDC said:

 

  .

Sorry if this posts weird, my phone is grabbing all previous posts when I try to reply. It's ugly.

My diet is very low on packaged/processed foods to begin with, so the move to gluten-free was not a huge issue, and isn't including a gluten-free substitute product for the most part.

 

As for enzymes, I have been working with a chiropractor that does functional medicine and we've talked of pursuing that path next.  He is the one that did all of the serum vitamin levels and laid it all bare.  Going back through the sporadic vitamin testing I'd had through the years, he showed it's been like that as far as we can find.  

I'd had one vitamin tested at a time here and there, and the medical doctors chalked it up to a fluke since my diet was healthy.  Doing them all at once showed a larger issue.

Ennis_TX, is your pancreas issue the cause or effect of the celiac, or are you gluten-free without a diagnosis of celiac?

[Ennis-TX]

1 hour ago, krystal16 said:

Sorry if this posts weird, my phone is grabbing all previous posts when I try to reply. It's ugly.

My diet is very low on packaged/processed foods to begin with, so the move to gluten-free was not a huge issue, and isn't including a gluten-free substitute product for the most part.

 

As for enzymes, I have been working with a chiropractor that does functional medicine and we've talked of pursuing that path next.  He is the one that did all of the serum vitamin levels and laid it all bare.  Going back through the sporadic vitamin testing I'd had through the years, he showed it's been like that as far as we can find.  

I'd had one vitamin tested at a time here and there, and the medical doctors chalked it up to a fluke since my diet was healthy.  Doing them all at once showed a larger issue.

Ennis_TX, is your pancreas issue the cause or effect of the celiac, or are you gluten-free without a diagnosis of celiac?

The exact cause is undetermined but it only partially works.  Amusingly it was a chiropractor a few years ago that pointed it out after I was already finding enzymes helped me to eat. He did test on my spine with a machine checking nerve signals, there were several low ones but the worst was around my T7 (https://binged.it/2w5rmez) that only had 15% of the nerve signals. I do have gluten ataxia with my celiac (my body attacks my nervous system and brain in response to gluten) so the theory is that the nerves were damaged to the extent it impacted my pancreas function. It also is the suspected reason I have huge glucose spikes to any carbs/sugars at all.

There are also correlations to EPI and inflammatory diseases like celiac, chrons, etc.  Something to look into and ask the doctor about. 

As to my celiac, it was oddly diagnosed in an untraditional manner about 6 years ago. I was already gluten free, and out of and unwilling to do the gluten challenge I proved my point and ate gluten in a doctors office and waited for the ataxia and vomiting to hit as a "proof of concept" sorta got them to add the note to my papers, scopes later down the line still showed damage. But then scopes years later showed celiac healed but found Ulcerative colitis, and the newest scopes showed both AI diseases healed....still some health quirks trying to get worked out but at least I am gaining weight now after 6 years.

[GFinDC]

Hi Krystal,

Yes, the forum software sometimes shows the last post content you were working on when replying.  There should be a "Clear Editor" button near the edit window you can click to get rid of that.  Hopefully it shows up on your phone.

Ennis_TX  has a good idea there.  Maybe you can try some Betaine HCL tablets with meals to improve digestion.   They turn into stomach acid when mixed in water and can possibly help break down foods.  So take them with a glass of water during the meal.  They are definitely not the kind of pill you want to dissolve in your mouth though!

I don't know if you have diaharrea frequently or not.  But the big D can cause malabsorption also.  Something that can help with D is taking psyillium husks with meals.  You can buy psyillium in powder form of in capsules.  It's fine to mix a tablespoon or 2 of psyillum husks into your veggies or soup or what not also.  They can help thicken soups which is handy.

If you are getting gassy try taking Altoids peppermints or peppermint tea.  Peppermint relaxes smooth muscles and can make it easier to belch/burp gas out.

It sounds like you have a pretty good diet already.  Often newbies seem to expect they will heal from celiac damage within a week or so.  I know I thought that.  But reality is it can take 18 months to several years to recover.  Depending on lots of factors.  Sometimes people develop additional food intolerances beyond just wheat, rye and barley too.  Often dairy is a problem for a few months too.

 

[krystal16]

I have minimal GI symptoms.  If I go gluten-free, I feel better but when I eat gluten, nothing major to remark of.  

I'm the kind of person who likes to do one thing at a time to get clear answers, so will add in the enzymes after the 3 mos gluten-free and bloodwork test.  My chiropractor has that as the next thing to add in, I'm not sure exactly which ones he planned.  

The ARMD changes things a bit, because no one's really heard of it starting so young from chronic poor absorption.  In a way, I'd like an official diagnosis of some sort, but only if it's figured out fairly soon.   The clock's ticking!