Could I get some advice, gluten-free but frequent flares.

[Haveaniceday]

I was only recently diagnosed, biopsy confirmed Marsh 3b. I am 26/F. 140lb

I have been very strictly gluten-free for only two months, I haven't eaten a single thing not prepared by myself (I work in health science and understand CC well).

Symptoms:

D/C , never normal, sometimes fatty, sometimes not

Hives, mostly at night, all over my body

Vision changes (eyes have been checked, it is only temporary)

Swelling in ankles and feet

Numbness hands, feet, scalp (sometimes scalp feels very bruised)

Fainting and vertigo only lasting during an 'attack' an hour or so.

Blood work shows high esr, mild b12 deficiency, everything else normal.

I was advised by my specialist that I should start to feel better within a month. I have noticed a return of energy, but I am still experiencing these attacks every other day. And my bowel movements have showed no improvement.

 

I am wondering what, if anything, I can do to help this? If it is just that I am early into recovery? Or what might be causing it, ie should I begin an elimination diet to see if there is any other sensitivities behind it. I have spoken to my family DR about the symptoms and I just get told yes all celiac related, but no other suggestions for help

 

Thank you!

[GFinDC]

Hi H.A.N.D.,

You are pretty early in the recovery process.  But, that doesn't mean you shouldn't look for answers.  I tend to think swelling is sometimes related to allergic reactions.  I used to have swelling in my feet/ankles. wrists and face.  I gave up a lot of different foods and don't have that anymore.  I am not sure just what got rid of the swelling and it doesn't matter since something else might be causing it for you.  My hayfever allergy symptoms reduced quite a bit after I was gluten-free awhile.  So I think my immune system was on overdrive, reacting to things like pollen with gusto.

One thing I considered regarding spells as you call them was a vagus nerve attack.  I thot those are  caused by reading food labels cross-eyed, or something equally vague (vagus?).

Another possible cause was gas and pressure in the abdomen from poor digestion related to bad bacteria and their products.  These attacks might last until pressure is relieved somehow.  Stomach queasiness was also sometimes present.  Weakness and possible fainting were other symptoms.

It's great that you are cooking all your own food.  You know the chef and can give them a piece of your mind if things aren't perfect!

I think your idea of an elimination diet is a good one.  Start with dairy if you are still eating it.  Other things to avoid are any sugar and carbs like rice, potato etc.  And maybe try some probiotics ( coconut yogurt maybe) and some Betaine HCL when eating.  Repopulating a good gut bacteria balance may take some time and work.  What do you want for Christmas?  World peace or gut balance?  I have a hard time deciding myself... 

 

 

[Scott Adams]

Full recovery can take up to two years, IF you are 100% gluten-free, and that is easier said than done. Re-check you current diet to make sure there is zero gluten, and you should not eat out until you fully recover if you can avoid it. Some celiacs need to go on a FODMAP diet to get relief, or eliminate other foods they may have issues with, so a food diary is a good idea.