what happens if you unknowingly gluten yourself for years? + blood work after scope?

[aquaholical]

Hey everyone. I’m still waiting on biopsy results from my scope a week ago. I used to post here back in 2011 when me and my gastro first suspected Celiac. I think what happened was in 2010 I cut gluten out of my diet because I was diagnosed with lyme disease (most lyme docs make their patients remove gluten from their diets regardless of sensitivity because of how inflammatory it is). I think because it had mostly been removed from my diet for over a year when I did the scopes back in 2011, dx got missed. 

Years passed and I just assumed I was gluten intolerant, not full blown celiac. So I got a little lax with avoiding it. Recently I started having horrific abdominal pains, headaches, nausea, crushing fatigue, blood in stool, numb left arm/hand, worsened vision. The pain got so bad I wound up in the ER with gastritis with bleeding. I saw a new GI after the ER (my last gastro recently moved away) and after the scope he said he thought it was either celiac or crohn's. 

I first thought there’s no way it could be celiac because I haven’t eaten much gluten since 2010 and the previous scope in 2011 had ruled it out. But suddenly a lightbulb went off and I remembered not only was I gluten free for over a year when I had that last scope, but I also haven’t been as on top of checking ingredients in my supplements after that scope because I thought I was just intolerant. I went digging through those supplements and sure enough found quite a few that had no “gluten free” labels that contained maltodextrin. So I think I may have unknowingly been glutening myself with these supplements on a daily basis for years and years. (and yes, I have been in pain for years and years)

What kind of damage would that do if you have full blown celiac but unknowingly gluten yourself for years? I’m worried because I can’t forget the doctor’s face after my scope. When he said he saw significant inflammation in my small intestine and I dismissively said every scope I’ve had in the last 8 years has shown that, his face fell and he looked at me with such pity and said “I doubt like this… this was beyond severe. Your intestines look like sandpaper.”

Could unknowingly glutening yourself for years cause irreversible damage? 

And if the biopsy for the scope comes back showing celiac do you think my doc will make me do blood work/labs to also confirm? I haven’t done any of those with this new doc yet and I’m worried he’ll need them for diagnosis. Ever since I realized I had gluten in several supplements and removed them, I’ve been improving. So I’m scared about the possibility of having to gluten myself again for more diagnostics.  

[cyclinglady]

17 minutes ago, aquaholical said:

Hey everyone. I’m still waiting on biopsy results from my scope a week ago. I used to post here back in 2011 when me and my gastro first suspected Celiac. I think what happened was in 2010 I cut gluten out of my diet because I was diagnosed with lyme disease (most lyme docs make their patients remove gluten from their diets regardless of sensitivity because of how inflammatory it is). I think because it had mostly been removed from my diet for over a year when I did the scopes back in 2011, dx got missed. 

Years passed and I just assumed I was gluten intolerant, not full blown celiac. So I got a little lax with avoiding it. Recently I started having horrific abdominal pains, headaches, nausea, crushing fatigue, blood in stool, numb left arm/hand, worsened vision. The pain got so bad I wound up in the ER with gastritis with bleeding. I saw a new GI after the ER (my last gastro recently moved away) and after the scope he said he thought it was either celiac or crohn's. 

I first thought there’s no way it could be celiac because I haven’t eaten much gluten since 2010 and the previous scope in 2011 had ruled it out. But suddenly a lightbulb went off and I remembered not only was I gluten free for over a year when I had that last scope, but I also haven’t been as on top of checking ingredients in my supplements after that scope because I thought I was just intolerant. I went digging through those supplements and sure enough found quite a few that had no “gluten free” labels that contained maltodextrin. So I think I may have unknowingly been glutening myself with these supplements on a daily basis for years and years. (and yes, I have been in pain for years and years)

What kind of damage would that do if you have full blown celiac but unknowingly gluten yourself for years? I’m worried because I can’t forget the doctor’s face after my scope. When he said he saw significant inflammation in my small intestine and I dismissively said every scope I’ve had in the last 8 years has shown that, his face fell and he looked at me with such pity and said “I doubt like this… this was beyond severe. Your intestines look like sandpaper.”

Could unknowingly glutening yourself for years cause irreversible damage? 

And if the biopsy for the scope comes back showing celiac do you think my doc will make me do blood work/labs to also confirm? I haven’t done any of those with this new doc yet and I’m worried he’ll need them for diagnosis. Ever since I realized I had gluten in several supplements and removed them, I’ve been improving. So I’m scared about the possibility of having to gluten myself again for more diagnostics.  

Why wait for the biopsy results?  Ask your GI for the celiac antibodies tests today.  

The maltodextrin?  It is considered gluten free because it is so refined and if derived from wheat, it must be declared on the label.  

Open Original Shared Link

I would look to other possible sources for a gluten exposure.  Do you eat out?  Eat oats?  How many processed gluten free foods do you consume?  

If celiac disease is the culprit, then no worries.  Your gut can heal despite years of consuming gluten.  I had some pretty severe damage and I healed (confirmed by a repeat biopsy).  

[icelandgirl]

Hi there,

I'm sorry that you have been suffering.  That sounds awful!  (((Hugs)))

I agree with cyclinglady.  Ask the Dr to order your full celiac panel.  Get that started while you wait on the biopsy results.

I hope that you feel better soon.  Please keep us posted on your results!

[Ennis-TX]

Maltodexrin in the US is normally corn or rice derived anyway. I have a severe issues with corn allergies and have learned in many cases they process it SOO much that the proteins that trigger my allergies are not even present.
With Lyme there are many other triggers, I have some friends with it and many can not tolerate corn or grains at all without feeling like crud. I have one that is fine with some grains but can not tolerate nuts. Try keeping a food diary and removing common culprits for issues with lyme and seeing if your symptoms improve. Due the nature of the disease it might take weeks before you notice a change. Try removing categories for a full week or two like first going grain free, then brining them back and and removing nightshades, nuts, etc. See if you can find what else might be causing your issues.

You mentioned bleeding, not to prod to much but we talking stool red, stool tarish blood, or vomit blood? This can be a sign to what area is bleeding and where your issues are. UC might be for example bloody stool....I spent years not knowing why I had that and always anemic.

[Posterboy]

aquaholical,

If you have had a Lyme diagnosis you should be aware some antibiotics used in treatment of Lyme disease have been shown to cause/be associated with "celiac like sprue" villous atrophy.

Here the very well article on it.

Open Original Shared Link

Doxycyline/Neomycin combinations were probably used in the treatment of your Lyme disease and Neomycin has been shown to cause "drug induced" celiac like villous atrophy.

see this International Journal of Celiac disease article about it.

Open Original Shared Link

If you think it is the chronic gastritis that is causing your problems you might want to have them check your stomach acid next time because low stomach acid is common in chronic gastritis as well as many nutrients that supplementing with might help you with.

Like Vitamin D, a B-Complex, Iron and Magnesium as Magnesium Citrate or Magnesium Glycinate.

Here is a link on it.

Open Original Shared Link

where they say quoting

" severe forms of atrophic gastritis may associate with failures in absorption of essential vitamins, like vitamin B12, micronutrients (like iron, calcium, magnesium and zinc), diet and medicines." occur with chronic gastritis.

Low B-12 can be the tingling you are experiencing.

Magnesium and Iron can help the fatigue and energy issues.

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

remember just cause antibiotics can cause these problems doesn't mean they did in you . . but I have had similiar problems with medicines/antibiotics myself.

I refuse to take Sulfa drugs because they "knock the wind" out of my sails much like you describe.

Try taking some Kefir or Kombucha Tea (if you are sensitive to Casein in Kefir) . . they can help you repopulate your gut with good bacteria.  Or other good fermented foods like sauerkraut etc.

A new study from 2013 established an approx. 30% greater chance of developing Celiac disease after a round of antibiotics in general.

But Neomycin has shown drug induced celiac like villous atrophy according to the International Journal of Celiac disease (IJCD) and I expect your doctor is not aware of this new research.

As always I hope this is helpful.

*** but this is not medical advice but share these findings with  your doctor and together you make a decision that is best for you.

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

Posterboy by the grace of God,