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Vitamins


Anteau25

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Anteau25 Apprentice

Hello. I've only posted a couple times. I've been pretty much reading posts and absorbing information. I was just wondering if someone could clarify a couple things for me.

I had my biopsy 6 weeks ago. My doctor told me that there was relatively mild damage to my small intestine. Obviously the longer you have untreated celiac disease the more damage to the small intestine. My question is this- could it possible that I have had celiac disease for at least 4 years even though I only have mild damage? Also, is it possible that I could have vitamin deficiencies? My specialist told me that considering my age (25yrs) and that I have mild damage, I should be ok with just taking a multivitamin every day.

I am also a type1 diabetic (since age 7), so I'm used to seeing a variety of doctors. I've had too many bad experiences and wrong advice. Althogh I am very thankful for being quickly diagnosed by this doctor, I just wanted make sure he was right about the vitamins.


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AndreaB Contributor

A multi vitamin would be good to take. Whether you need more than that would have to be determined by your doctor.

I use Freeda vitamins. There is a thread about vitamins that isn't too terribly old. Hopefully others will pipe up with what they use.

All-about-March Newbie

Anteau,

For me it was my vitamin deficiencies that led my reg. GP to consider celiacs. I have several needs for supplements. I take B12, iron, calcium with D and magnesium, C, E and folic acid. Also a multi at night. I use Jamieson (canadian brand I believe) which is free of wheat, gluten, yeast, starch, sugar and lactose.

Are you working with a dietician for your new gluten free diet? My GI doc recommended me to one to discuss the diet and nutritional/ supplemental needs. Most of the initial supplements were from her recommendations, and I see my GP for reg. bloodwork to check on the levels and then adjust accordingly.

Other than intestinal damage, there are so many variables that may cause defieniencies ie: vegitarian diet, other allergies, being female, medications etc...

If you eat a well balanced diet, I would say that a multi would be good for now, and if you have concerns, ask your doc to check your levels for possible deficiencies for you and go from there.

For me B12 supplementation is going to be life long due to familial tendency for pernicious anemia and now celiacs. Calcium as well - all the women in my family have osteoporosis / osteopenia.

Hope you get your answers! Good luck!

emcmaster Collaborator

I don't know about the damage issue - I'm self-diagnosed and had a colonoscopy in July 2005 that didn't return any results (he said everything looked normal)... however, I am pretty certain that the problems I've had since January 2004 can be attributed to celiac.

As for the vitamin, I take Open Original Shared Link. It is free of all allergens and isn't too expensive. I've had good results with it.

LKelly8 Rookie
I had my biopsy 6 weeks ago. My doctor told me that there was relatively mild damage to my small intestine. Obviously the longer you have untreated celiac disease the more damage to the small intestine. My question is this- could it possible that I have had celiac disease for at least 4 years even though I only have mild damage? Also, is it possible that I could have vitamin deficiencies? My specialist told me that considering my age (25yrs) and that I have mild damage, I should be ok with just taking a multivitamin every day.

Yes, yes and yes. :D I had the symptoms of celiac for 6-7 years before diagnosis and had only mild damage on biopsy, and my bloodwork came back normal twice. Damage to the villi are measured using the Marsh Scale.

From the University of Iowa website:

"The Marsh stages scale, derived from a study of patients with known celiac disease who were fed gluten, is used to assess the level of intestinal damage inflicted by celiac disease on each individual patient. Damage starts as an increase in IEL (Infiltrative, Marsh 1), then an increase in crypt length (Hyperplastic, Marsh 2), followed by flattening (atrophy) of the villi (Destructive, Marsh 3). Severe, relentless injury will result in loss of crypts and villous atrophy (Hypoplastic, Marsh 4). Often a patient's symptoms do not correlate with endoscopic or histological damage. Patients with mild symptoms may have severe damage, whereas patients with severe symptoms may have mild damage."

See Open Original Shared Link for the full article.

tiffjake Enthusiast
Hello. I've only posted a couple times. I've been pretty much reading posts and absorbing information. I was just wondering if someone could clarify a couple things for me.

I had my biopsy 6 weeks ago. My doctor told me that there was relatively mild damage to my small intestine. Obviously the longer you have untreated celiac disease the more damage to the small intestine. My question is this- could it possible that I have had celiac disease for at least 4 years even though I only have mild damage? Also, is it possible that I could have vitamin deficiencies? My specialist told me that considering my age (25yrs) and that I have mild damage, I should be ok with just taking a multivitamin every day.

I am also a type1 diabetic (since age 7), so I'm used to seeing a variety of doctors. I've had too many bad experiences and wrong advice. Althogh I am very thankful for being quickly diagnosed by this doctor, I just wanted make sure he was right about the vitamins.

Welcome! Well, I know you said you have been here for a while, but welcome from me! I take GNC's Prenatals. And their sublingual B12. Both are gluten-free, and work for me!

Anteau25 Apprentice

Thank you everyone for responding. Since being diagosed with celiac disease, I have looked back and now see sympotoms as far back as four years. It was only a few months before the diagnosis that I got really sick and vomiting all the time. My dr told me that my bloodwork showed that my "numbers are very high". Then the biopsy showed mild damage. I was a little confused, but it's clearer now. Thanks.


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    • asaT
      Scott, I am mostly asymptomatic. I was diagnosed based on high antibodies, low ferritin (3) and low vitamin D (10). I wasn't able to get in for the biopsy until 3 months after the blood test came back. I was supposed to keep eating gluten during this time. Well why would I continue doing something that I know to be harmful for 3 more months to just get this test? So I did quit gluten and had the biopsy. It was negative for celiacs. I continued gluten free with iron supps and my ferritin came back up to a reasonable, but not great level of around 30-35.  Could there be something else going on? Is there any reason why my antibodies would be high (>80) with a negative biopsy? could me intestines have healed that quickly (3 months)?  I'm having a hard time staying gluten free because I am asymptomatic and i'm wondering about that biopsy. I do have the celiacs gene, and all of the antibody tests have always come back high. I recently had them tested again. Still very high. I am gluten free mostly, but not totally. I will occasionally eat something with gluten, but try to keep to a minimum. It's really hard when the immediate consequences are nil.  with high antibodies, the gene, but a negative biopsy (after 3 months strict gluten-free), do i really have celiacs? please say no. lol. i think i know the answer.  Asa
    • nanny marley
      I have had a long year of testing unfortunately still not diagnosed , although one thing they definitely agree I'm gluten intolerant, the thing for me I have severe back troubles they wouldnt perform the tests and I couldn't have a full MRI because I'm allergic to the solution , we tryed believe me  I tryed lol , another was to have another blood test after consuming gluten but it makes me so bad I tryed it for only a week, and because I have a trapped sciatic nerve when I get bad bowels it sets that off terribly so I just take it on myself now , I eat a gluten free diet , I'm the best I've ever been , and if I slip I know it so for me i have my own diagnosis  and I act accordingly, sometimes it's not so straight forward for some of us , for the first time in years I can plan to go out , and I have been absorbing my food better , running to the toilet has become occasionally now instead of all the time , i hope you find a solution 🤗
    • asaT
      I was undiagnosed for decades. My ferritin when checked in 2003 was 3. It never went above 10 in the next 20 years. I was just told to "take iron". I finally requested the TTgIgA test in 2023 when I was well and truly done with the chronic fatigue and feeling awful. My numbers were off the charts on the whole panel.  they offered me an endoscopic biopsy 3 months later, but that i would need to continue eating gluten for it to be accurate. so i quit eating gluten and my intestine had healed by the time i had the biopsy (i'm guessing??). Why else would my TTgIgA be so high if not celiacs? Anyway, your ferritin will rise as your intestine heals and take HEME iron (brand 4 arrows). I took 20mg of this with vitamin c and lactoferrin and my ferritin went up, now sits around 35.  you will feel dramatically better getting your ferritin up, and you can do it orally with the right supplements. I wouldn't get an infusion, you will get as good or better results taking heme iron/vc/lf.  
    • par18
      Scott, I agree with everything you said except the term "false negative". It should be a "true negative" just plain negative. I actually looked up true/false negative/positive as it pertains to testing. The term "false negative" would be correct if you are positive (have anti-bodies) and the test did not pick them up. That would be a problem with the "test" itself. If you were gluten-free and got tested, you more than likely would test "true" negative or just negative. This means that the gluten-free diet is working and no anti-bodies should be present. I know it sounds confusing and if you don't agree feel free to respond. 
    • SilkieFairy
      I realized it is actually important to get an official diagnosis because then insurance can cover bone density testing and other lab work to see if any further damage has been done because of it. Also, if hospitalized for whatever reason, I have the right to gluten-free food if I am officially celiac. I guess it gives me some legal protections. Plus, I have 4 kids, and I really want to know. If I really do have it then they may have increased risk. 
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