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Newly Diagnosed - Words of wisdom?

LibraryLady
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LibraryLady Newbie
LibraryLady
Posted

Hello everyone,

After many specialists and doctor visits I finally have answers. The biopsy results fully confirmed that I have Celiac disease and that it caused enough damage to create malabsorption. I’m currently on 2nd week gluten free and feeling overwhelmed.

 

I am so thankful to finally have answers, but my doctor says it will take 2-3 months gluten free for my body to heal and another 2 months to get back to good iron and mineral levels. 
 

In this waiting place is hard because I do not have much energy and my immune system is not working well. (I just got COVID again.)

 

All this to ask, does anyone have words of wisdom as I wait for my body to heal? What do you wish someone had said to encourage you when you were first diagnosed?

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trents Grand Master
trents
Posted

Welcome to the forum, LibraryLady!

Your doctor may be a bit optimistic about your healing rate. Typically we find that it takes around 2 years for full healing of the villous lining of the gut. But, you should start feeling better well before that. My strong recommendation is that you jump start your recovery from nutritional deficiencies with vitamin and mineral supplementation. We commonly recommend a multivitamin combined with sublingual b12, B-complex, D3 (5k-10k IU daily), and magnesium glycinate (this is a magnesium formulation that is well-absorbed). Make sure all supplements are gluten free. Wheat starch can be used as a filler in pills. Costco's Kirkland Signature brand and their Nature Made products are good choices. They will state on the bottle if they are gluten free. None of those supplements and vitamins I listed are toxic at the levels recommended. B vitamins are water soluble so you just pee out any excess.

Scott Adams Grand Master
Scott Adams
Posted

Welcome to the forum!

I agree with @trents, and it is also very important to fully understand where gluten can hide, so this article might be helpful:

 

Wheatwacked Veteran
Wheatwacked
Posted
  • Raise your vitamin D. Low vitamin D is the cause of your weakened immune system and has been linked to every autoimmune disease. Half the US population has low D.
  • Zinc is an antiviral. Zinc gluconate lozenges protect the mucous membranes from airbourne viruses.
  • For energy Vitamins B1, B3, B5, Taurine. 
  • Anemia vitamin B12
  • Liver and gallbladder, fat digestion: choline. Less than 10% have adequit intake.
  • Poor intake + celiac disease villous atrophy = subclinical malnutrition.
  • Gets lots of folate, vitamin A and E from food sources. Gluten free processed food is not required to be fortified.
LibraryLady Newbie
LibraryLady
Posted
  • Author
3 hours ago, trents said:

Welcome to the forum, LibraryLady!

Your doctor may be a bit optimistic about your healing rate. Typically we find that it takes around 2 years for full healing of the villous lining of the gut. But, you should start feeling better well before that. My strong recommendation is that you jump start your recovery from nutritional deficiencies with vitamin and mineral supplementation. We commonly recommend a multivitamin combined with sublingual b12, B-complex, D3 (5k-10k IU daily), and magnesium glycinate (this is a magnesium formulation that is well-absorbed). Make sure all supplements are gluten free. Wheat starch can be used as a filler in pills. Costco's Kirkland Signature brand and their Nature Made products are good choices. They will state on the bottle if they are gluten free. None of those supplements and vitamins I listed are toxic at the levels recommended. B vitamins are water soluble so you just pee out any excess.

Thank you for sharing all of this!

GlutenbusterMama Rookie
GlutenbusterMama
Posted
16 hours ago, LibraryLady said:

Hello everyone,

After many specialists and doctor visits I finally have answers. The biopsy results fully confirmed that I have Celiac disease and that it caused enough damage to create malabsorption. I’m currently on 2nd week gluten free and feeling overwhelmed.

 

I am so thankful to finally have answers, but my doctor says it will take 2-3 months gluten free for my body to heal and another 2 months to get back to good iron and mineral levels. 
 

In this waiting place is hard because I do not have much energy and my immune system is not working well. (I just got COVID again.)

 

All this to ask, does anyone have words of wisdom as I wait for my body to heal? What do you wish someone had said to encourage you when you were first diagnosed?

Welcome to the forum!! It is overwhelming at first, but I promise it does get easier. Start small and don't be hard on yourself when you get glutened. It's a learning process. For my son, we try to make the best of it and have some fun with it. We like to try gluten-free foods and rate them. We try to find the gluten-free version of his favorite meals/snacks. He is a year in and I can tell you that it is far less daunting than it was those first few weeks we found out.

LibraryLady Newbie
LibraryLady
Posted
  • Author
9 minutes ago, GlutenbusterMama said:

Welcome to the forum!! It is overwhelming at first, but I promise it does get easier. Start small and don't be hard on yourself when you get glutened. It's a learning process. For my son, we try to make the best of it and have some fun with it. We like to try gluten-free foods and rate them. We try to find the gluten-free version of his favorite meals/snacks. He is a year in and I can tell you that it is far less daunting than it was those first few weeks we found out.

Thank you! This is really encouraging!

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    • cristiana
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      By cristiana · Posted

      Hi Kathleen Welcome to the forum. I am based in the UK so I am just picking this post up before our US based moderators appear.  I think they will want to know the lab values of both of the figures you have provided us with (min/max reading) as they tend to vary - could you post those for us, please? We see a lot of coeliacs who also have helicobacter pylori on this forum.  I am not sure how that would reflect in the blood results so I will leave this to be answered by my more experienced colleagues @trents or @Scott Adams. Obviously, you won't really know for sure where things stand until you have your meeting with the consultant.  I am sorry that you have to wait, but it will be worth knowing one way or another.  Apart from his recent gastric issues, it is fantastic to know that your son is otherwise a picture of health.  But it is worth bearing in mind that undiagnosed coeliac disease can cause health issues in the longer term, so far better to know now if he does turn out to have coeliac disease and adapt your son's diet accordingly, before other health issues have a chance to appear. Cristiana  
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