1 month in, still struggling, Dietician and Drs coming up.

[rt-116]

Hi everybody

I've posted a couple of times previously on here and found the advice from you lovely people really useful and supportive. I'm sorry for any repetition in my post today - currently at work feeling completely overwhelmed and tearful all over again at current symptoms and feelings and thought I'd try and seek a bit more advice.

Brief background - diagnosed with coeliac a month ago (by biopsy & TTG), and have been eating gluten free since. From what I've read, a month is not really long enough to expect any healing to occur, and I am aware of this so I'm probably just being impatient.

Based on blood tests post TTG, and PRE endoscopy (in November) I have been told I have anemia, low ferritin, and low vitamin D, which from what I understand is common in those newly diagnosed. I am seeing a dietician and my doctor next week, and so other than a basic multi vitamin I have not been taking any additional supplements as I am waiting for formal advice. I have a few questions that I am considering asking the dietician and doctor and wondered if anyone could validate me feeling like I could/should ask this!!

1. Could being deficient in vitamin D, ferritin, and anemic cause or contribute to any symptoms such as tearfulness, low mood, itching / slight leaking anus after bowel movements, and twitching around the eyes, or am I not giving  the gluten free diet enough of a chance to resolve these things on its own? These symptoms are getting me down and I struggle to accept that being low in vitamins could make me feel so rough!

2. With a Ferritin of 6 and Vitamin D < 30 , should I be on higher supplements or continue with regular tablets containing the recommended daily allowance?

3. When seeing the dietician / doctor, I'm wondering whether to ask for any additional vitamin checks, such as magnesium or zinc? I've read that deficiencies in magnesium in particular can lead to twitching so wonder whether I should be on supplements for these too.

4. As the vitamin levels mentioned above are from November, I am assuming they will have either stayed the same or dropped after a further 2 months of eating gluten for the endoscopy. Now I am diagnosed and eating gluten free, when would be a good time to request a repeat test of those levels (ferritin, vit D etc). I am having a DEXA bone scan this week.

Sorry for the rambling post, thank you to anyone out there for any advice at all. Hoping this journey will become easier in time!

[Fenrir]

The short answer is yes, with only a month all of these things could still be a problem even if 100% gluten-free. I know many new celiacs get exposed to gluten quite often early on unintentionally due lack of knowledge too. It's also possible you may be getting exposed to cross contamination from sources you haven't figured out yet. 

[cyclinglady]

What Fenrir said is spot on!  

It takes time to heal.  Most celiacs take up to a year to heal, so be patient.  

Anemia was my main (only really)  symptom (my ferritin was a 2 and hemoglobin Was very very low).  My GI prescribed iron supplements. I was able to tolerate them and my ferritin rose quickly in just two months or so.  I did have an advantage in that my hubby had been gluten-free 12 years before my diagnosis, so I knew the diet well.  I had a vitamin and mineral panel run and had no other deficiencies.  Did fracture my back doing nothing within months of my celiac disease diagnosis, so good that you are getting a scan especially if you are post or pre-menopausal.  

Remember, gluten just triggers an autoimmune response that can last until your body decides to stop attacking you!  Expect setbacks, identify food intolerances, get sleep and reduce your stress.  Do not eat out until you feel like you can take the risk and are feeling good.  

 

[rt-116]

2 hours ago, cyclinglady said:

What Fenrir said is spot on!  

It takes time to heal.  Most celiacs take up to a year to heal, so be patient.  

Anemia was my main (only really)  symptom (my ferritin was a 2 and hemoglobin Was very very low).  My GI prescribed iron supplements. I was able to tolerate them and my ferritin rose quickly in just two months or so.  I did have an advantage in that my hubby had been gluten-free 12 years before my diagnosis, so I knew the diet well.  I had a vitamin and mineral panel run and had no other deficiencies.  Did fracture my back doing nothing within months of my celiac disease diagnosis, so good that you are getting a scan especially if you are post or pre-menopausal.  

Remember, gluten just triggers an autoimmune response that can last until your body decides to stop attacking you!  Expect setbacks, identify food intolerances, get sleep and reduce your stress.  Do not eat out until you feel like you can take the risk and are feeling good.  

 

Thank you so much for your thoughts and for sharing your experiences. Really appreciate it! 

[GFinDC]

Hi rt.

The first 6 months of the gluten-free diet can be kind of rough.  It takes time for the gut to heal and the body to absorb vitamins and minerals right again.  Also your gut flora is changing as the villi heal and provide more living space for bacteria.  Your villi may start making enzymes like lactase again too. So lots of changes going on.

Eating  a bland diet of easy to digest foods can help.  Avoiding sugar, dairy, oats and carbs is helpful too.

I had low vitamin D for years.  I read somewhere that it is more effective to take a smaller vitamin D pill daily than a big one weekly.  So I took 1000 IU of D daily and that did bring my vitamin D up finally.  The 50K IU weekly D my Dr. prescribed didn't seem to help.

Edited February 19, 2020 by GFinDC

[rt-116]

2 hours ago, GFinDC said:

Hi rt.

The first 6 months of the gluten-free diet can be kind of rough.  It takes time for the gut to heal and the body to absorb vitamins and minerals right again.  Also your gut flora is changing as the villi heal and provide more living space for bacteria.  Your villi may start making enzymes like lactase again too. So lots of changes going on.

Eating  a bland diet of easy to digest foods can help.  Avoiding sugar, dairy, oats and carbs is helpful too.

I had low vitamin D for years.  I read somewhere that it is more effective to take a smaller vitamin D pill daily than a big one weekly.  So I took 1000 IU of D daily and that did bring my vitamin D up finally.  The 50K IU weekly D my Dr. prescribed didn't seem to help.

Thank you so much for your comments and the information!