Just diagnosed (blood work) awaiting endo. many questions. please help.

[kopiq]

Hi . I was just diagnosed by my GP who dosent really know anything about Celiac disease and am awaiting to see a Gastro Specialist.

Unknowingly I have been eating whole grains and tons of gluten the last two years and so sick and couldn't figure out why until i finally found a dr to run blood work.

Ive cut out all gluten since yesterday and feel better. my issues now area very sore stomach (healing i presume)

and more importantly also Iam not absorbing nutrients. Im 6'1 i38 lbs. a walking skeleton with no body fat.

my vitamin D is very low and the dr prescribed me 3000 iu a day. I took 1500iu and i felt like i was in a coma. eating carbs on top of it made it worse and i developed bad muscle pain in my feet and fingers and sever headache.

the effects of food hit me hard, its a very slow digestion process, the calming effects of brown rice or buckwheat for example make me feel medicated for hours and into the next day.

this i take it is the slow absorption of food and nutrients? my stomach feels dead, possible gastritis?

how long for my stomach and small intestine to heal to get back its strength, what vitamins will help repair the damage of my stomach and small intestine?

would taking vitamins through skin patch work better than pills? im very hesitant to take any more vitamins pills as i cant take much and the effects are very strong and long lasting.

thanks for any advice.

[OfcVal]

It can take some people years to heal. The good news is that you will continue to feel better by not allowing gluten into your diet.  Also get tested for other food allergies such as eggs, dairy, soy…. as many people with Celiac also have other food allergies which can make you feel lousy even though you are not consuming gluten.  

[kopiq]

Thank you

[trents]

Ditto to what OfcVal said. It is common for celiacs to cross react to other foods like they do to gluten, especially foods that have proteins similar in structure to gluten. Chief among them are dairy, oats, eggs and soy. Dairy is the most frequent culprit. One small study found 50% of celiacs react to CMP (Cow's Milk Protein) like they do gluten. Just something to monitor.

Focus on simple cooking and fresh foods. Avoid seasonings and spices because they can contain gluten either intentionally or through cross contamination during processing. Stick to salt and pepper. Rely on fresh meat, fresh veggies, fresh fruit. Avoid eating out. Avoid relying on a lot of pre-packaged gluten snacks and foods because they are not only expensive but also largely devoid of nutrition. Gluten free flours are not required by government regulations to be fortified as are their mainstream gluten-containing counterparts.

I have not had any experience with epidermal patch vitamin products so I won't comment on that. On this forum we commonly recommend: 

• sublingual B12
• B-complex
• Magnesium (glycinate or citrate form, not magnesium oxide)
• D3 (5-10k IU daily)
• zinc picolinate 

Make sure all your supplements and any meds you are taking are gluten free. 

It commonly takes two years or more for complete healing of the damaged villous lining of the small bowel but improvement in symptoms and health usually starts within weeks of going gluten free. The healing time depends on a number of things including severity of damage, age and consistency and dedication with regard to the gluten free diet. 

I am including a link to an article that should be helpful in getting you off on the right foot in your efforts to eat gluten free. Some things in this article may be overkill unless you are a supersensitive celiac but it is very helpful nonetheless: 

But please hear this! If the gastroenterologist wants to perform an endoscopy with biopsy of the small bowel lining to confirm your general practitioner's diagnosis of celiac disease, you should continue to consume normal amounts of gluten until the procedure or you risk invalidating the outcome by starting a gluten free diet ahead of that. Many have made this mistake. Do you have an appointment date yet with the gastroenterologist? In the USA it is normal practice for positive blood work results to be confirmed by an endoscopy/biopsy. The latter is considered the gold standard of celiac disease diagnosis. Do you know if you already have an official diagnosis of celiac disease in your medical record from your GP? I ask this because you stated in your first post that your GP didn't know much about celiac disease.

 

 

Edited 53 minutes ago by trents