I keep getting sick

[Annilee]

Hey so I’m somewhat newly diagnosed with celiacs. I am having a hard time navigating and managing everything right now and was looking for some advice. My sensitivity to gluten has increased by a lot since being diagnosed (I’m not sure if that’s common) but it feels like there are very few things that don’t make me sick. However, I am now suffering from malnutrition, as well as pancreatic insufficiency, anemia, and leaky gut syndrome as complications to having celiacs disease. I’m losing weight rapidly as well. I do share a household with people who keep gluten in their diets,  so I am really careful to separate everything. I have different kitchen ware and appliances, as well as separate cupboards for my food to avoid contamination. I never eat out, and prepare meal plans. But it feels like no matter how many precautions I take, I am still getting sick. I know that’s somewhat to be expected from having any autoimmune/chronic illness. But I’m just running out of options on what to eat without getting sick. I’ve spoken with my  GI specialist about this, and we’ve been trying to figure out if there are other underlying factors that might be making me so sick. But I thought maybe I’d try and get some input from people who actually struggle with this disease. Is this common? Is there advice or suggestions on what I could be doing better? 

[trents]

Welcome to the forum, Annilee!

Are you still eating oats or dairy? These are common "cross reactors" whose proteins (oats-avenin, dairy-casein) have structures very similar to gluten and blunt SB villi like gluten does for some celiacs. Intolerance of eggs is also fairly common in the celaic community. Also, some meds cause villi blunting as well. What meds are you on?

You might also want to investigate something called histamine intolerance/mast cell activation syndrome (MCAS) and SIBO (small intestine bacterial overgrowth. These are all common secondary medical problems that often accompany celiac disease.

[cristiana]

Hi Annilee

Welcome!  

I agree with the above advice from trents.

@trents - do you think Fasano's diet might help here?  I am not on the forum as much as I used to be so I may have missed it, but I haven't noticed it mentioned recently.  It used to be suggested a lot when I was first diagnosed?

 

[trents]

3 hours ago, cristiana said:

Hi Annilee

Welcome!  

I agree with the above advice from trents.

@trents - do you think Fasano's diet might help here?  I am not on the forum as much as I used to be so I may have missed it, but I haven't noticed it mentioned recently.  It used to be suggested a lot when I was first diagnosed?

 

I think it's certainly worth a try but I wouldn't rule out a temporary regimen of steroids to calm the immune system down in conjunction with the Fasano diet.

[cristiana]

Thanks, @trents.

Annilee - do have a good look at the information about the Fasano diet, by following the link above.

It could help you, it has certainly helped a lot of people on this forum in the past.

Take care,

Cristiana

[Scott Adams]

Definitely follow up with your doctor about your symptom as well, as there could also be something else going on. Just to make sure you are 100% gluten-free this article may also be helpful: