Symptoms Persisting on gluten-free Diet

[tumbleweed]

Hi All, I was diagnosed with celiac about 4 months ago and am having persisting symptoms. I'm looking for some advice. 

Since January of this year I was having gastrological symptoms (sharp abdominal pain after consuming gluten or acidic foods, constipation, acid reflux, bloating, mild weight gain). Throughout the year I noticed other symptoms like face puffiness, especially around my eyes, mouth, and under my chin. I went gluten free in June because I realized it alleviated some intestinal symptoms. They tried to give me omeprazole for the acid reflux but it made me very nauseous so I stopped. I also found out I was anemic and began taking iron supplements. In August I went back on a gluten diet for two weeks in order to have the celiac blood test, which came back positive. The next available appointment for an endoscopy/biopsy wasn't until November and my doctor said I could remain gluten-free because it would put me in too much pain, but that it may cause a false negative in the biopsy. So I decided to act as if I had celiac-- I stuck to a VERY strict gluten-free diet and started to really pay attention to cross-contamination. I got all new cookware, etc. However, at that point a whole host of other symptoms began, mostly neurological. I started getting debilitating brain fog (like I couldn't think clearly at all, couldn't pay attention, felt brain dead), my anxiety and depression went through the roof, I felt dizzy constantly (like the room was spinning), headaches, fatigue. The intestinal symptoms got better-- no more sharp pain, no acid reflux unless I got gluten sick, less bloating. My skin and face also began to suffer-- it started looking dull and sagging like I was aging (I'm 24 and otherwise healthy), acne got worse, my face was more swelled than before, my eyelids started drooping (the left one droops all the way to my eyelashes). But the neurological symptoms were the most difficult to endure because it made functioning in daily life almost impossible. I suspected a thyroid issue and got that tested but the results were normal. I finally had my endoscopy and the biopsy results were negative other than some "mild chronic inflammation."

Slowly over the course of 4 months there has been some improvement (my face looks less puffy some days/acne has cleared up), my dizziness is better but still persistent, my brain is still foggy but better than before. My first clue to getting gluten cross-contaminated is a bout of dizziness followed by a panic attack and acid reflux, constipation the next day, and pretty bad brain fog for a few days until I level off. I have little to no other gastrological symptoms. Despite being better than before, I still haven't felt "normal" in 4 months since August. I had been feeling like I was improving slightly but recently I feel like it's leveling off and I'm stuck at this half-sick stage. I am very strict with my eating habits and I eat mostly vegetables and meat. I exercise multiple days a week. I don't understand why these neurological symptoms came on so suddenly when I had already been on a gluten-free diet for a few months... I don't understand why I'm not getting better. 

When I consulted my doctor about this she said I might be having physical manifestations of anxiety/depression (since they came on so quickly after I was formally diagnosed and that could've triggered it). But I feel like there is more going on in my body. I just want to feel like a normally functioning human again.

So I'm asking for some advice on what to do next? Why am I not improving? Do I just need to give it more time? Any other tests I could be taking to see if something else is going on? My doctors have been so unhelpful. 

Thank you!

[GFinDC]

Hi,

Welcome to the forum! :)

It's good that you are having some health improvements on the gluten-free diet.  It sounds like you may have been glutened a few times since you started gluten-free four months ago?  Celiac disease is an autoimmune disease.  The immune system is triggered by just a tiny amount of gluten.  Once triggered the immune reaction can go on for weeks or months.  So every little bit of gluten in your diet matters.  Don't feel bad though, it is not super unusual for people to make mistakes and get glutened early in the diet.

Some things you can try are to cut out dairy and oats.  Celiac can make us lactose intolerant.  Plus some of us have an immune reaction to oats like we do to wheat, rye and barley.  You can always try those foods again after 6 months to see if they are ok.

Regarding the iron deficiency, some foods inhibit absorption of iron.  So avoiding those foods when you are eating iron rich foods can help.  Calcium (dairy), tea, coffee, eggs, and spinach are some foods that inhibit iron absorption.

https://www.livestrong.com/article/367750-foods-to-avoid-with-anemia/

 

Edited December 19, 2019 by GFinDC

[knitty kitty]

Have you been checked for vitamin and mineral deficiencies, besides iron?  Newly diagnosed Celiacs often have nutritional deficiencies.  

Neurological symptoms may be caused by deficiencies in thiamine, niacin and B12.  Nitrous Oxide used in anesthesia during endoscopy can cause a sudden loss of vitamin B12.  Worsening acne can be a result of Vitamin C deficiency.  Depression can be a result of Vitamin D deficiency.     

Talk to your doctor about checking for deficiencies!  Your body may still be having problems absorbing sufficient nutrients.  Celiac Disease causes malabsorption which results in malnutrition.  It's not all in your head.  You know your body best.  Checking for vitamin and mineral deficiencies is part of follow up care for Celiacs.

Hope this helps!