Still feeling worse and worse since quitting gluten? And weird symptoms that may be related to celiac damage?

[lydialoo]

So i have recently been diagnosed celiac and have been gluten free for just over a month. My thyroid function is also sluggish (I'm assuming due to my damaged gut not pulling in enough nutrients?) And my fertility is also affected, the docs don't seem at all concerned about any of this. I've also been suffering swelling under my chin and every time I mention this to the docs I'm told it's 'probably something viral'. Ughhhhh

I'm eating super clean, following a gluten free diet and eating to heal a leaky gut. Yet, I'm feeling so nauseous after I eat, energy levels are low, super constipated and bloated all time! My face and tongue is constantly swollen. 

I'm a dancer and I've not been able to work because of all this and I'm feeling really stressed and hopeless. Does anyone have some advice or similar experience with this array of symptoms? 

[trents]

Welcome to the forum, lydialoo!

Are you taking any high potency vitamin and mineral supplements to address the inevitable nutritional deficiencies that accompany long term undiagnosed celiac disease? As a professional dancer I imagine it is important to remain thing. What's your calorie intake like?

I would not assume your thyroid sluggishness is temporary. Hashimoto's is common within the celiac population but it may be independent of nutrition. Autoimmune disorders tend to cluster.

Swelling in face and tongue is unusual. I have not heard of those symptoms in connection with celiac disease.

[knitty kitty]

Welcome to the forum, @lydialoo!

Ask your doctor to check for vitamin and mineral deficiencies as part of proper follow up care for Celiacs.  Ask for a referral to a nutritionist or dietician who can point you towards a nutrient dense diet.  

Most newly diagnosed Celiacs are deficient in B Complex vitamins, Vitamin D and minerals like iron, zinc, and magnesium.  

Vitamin D deficiency has been linked to fertility problems.  Vitamin D helps regulate the immune system.  (My swollen glands in my neck shrank after I got my Vitamin D level up around 80 nmol/L or higher.  

Vitamin C has helped my facial swelling.  Histamine release is part of the autoimmune response of CeD.  Our bodies need Vitamin C and Cobalamine B12, Folate B9, and Pyridoxine B6 to eliminate histamine.  These vitamins are frequently low in people who have a limited diet because of food sensitivities that seem to pop up because of high histamine levels.

Insufficiency in Thiamine B1 has been linked to sluggish thyroid, fatigue, nausea, constipation and digestive system symptoms (ask your doctor about Gastrointestinal Beriberi).  

Thiamine B1 and Niacin B3 are needed to make and secrete stomach acid and bile from the gallbladder.  Without enough Thiamine and Niacin (Niacinamide is the nonflushing form), stomach acid may be low, resulting in poorly digested carbohydrates which intestinal bacteria feed on releasing gas as a by-product which causes bloating.  

Thiamine is needed for many life-dependant enzymes, and to turn proteins, carbohydrates and fats into energy.  People who are normally very physically active, like athletes such as yourself, need more Thiamine.  (So do people who are going through a physical or emotional trauma and those who work outside in hot weather.)  

Blood tests for vitamin deficiencies are not always accurate.  Previously taken supplements and even what was eaten in the previous twenty-four hours can cause inaccurate measures.  Celiac Disease damages the part of the small intestine where most of our vitamins are absorbed, supplementing while healing is beneficial.  Talk to your doctor about supplementing vitamins and minerals while you are healing.  Benfotiamine, a form of Thiamine B1, has been shown to promote healing in the intestines.  

Remember that gluten free facsimile foods are not required to be enriched or fortified with vitamins and minerals like their gluten containing counterparts.  Keep a food-mood-poo'd journal to help pinpoint problematic foods.  Your nutritionist will appreciate it, too. 

Hope this helps!

[Scott Adams]

The swollen tongue and and face sound more like a food allergy. Perhaps you should try an elimination diet and keep a food diary to see if you can identify the culprit? 

Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months.

Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal.

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