7 months on and no improvement

[nataliet24]

Did anyone else have biopsy results like mine im only 22 years old and it scares me to think I have so much damage and that it won’t repair itself as I have been gluten free for 6 months now and seen no improvement at all apart from not being as bloated I still have stomach pain every day I’m scared I’m going to end up with refractory coeliac can I have some positive stories please  

 

results were. 

This is suggestive of total villous atrophy and an increased number of intraepithelial lymphocytes. Endoscopically we saw scalloped duodenal folds all suggesting this patient has got coeliac disease. 

 

Sounds very scary to me 

[Ennis-TX]

First lets go over your eating habits, living environment/cooking place. Have you read the newbie 101 thread? Some stuff has to be replaced or risk CC with your new gluten free food. IS the whole house Gluten Free or do you share it with gluten eaters? Also you should not eat out as your playing Russian roulette. A single exposure can keep antibodies raised for for weeks, although this varies from person to person.

For me the first year was hard, I kept messing up, making mistakes of what was and what was not safe. By example I was told couscous was gluten free by someone at a buffet when asking what I could eat...no it is not. I also lived in a shared house and my family kept on eating gluten, cooking with flour, and Cross contaminating my food, condiment jars, and cooking equipment. I eventually had to move out to a dedicated place as my family would not help take precautions and further complications made it dangerous for other reasons.

I have been doing good for years, few mistakes when I tried to eat out, or chanced trying a new food. Heck right now I am dealing with another non gluten issue that is more painful but less debilitating...long story. Anyway, give it time to learn the diet, stick to whole foods, go over everything your doing and keep a food dairy to track down other issues.

It is not uncommon for us to develop other food intolerance...by example the tips of your villi will produce the enzymes to break down dairy...so dairy intolerance is going to a issue to deal with for awhile til it heal. Alot of celiacs react to oats and have to remove them. There are other foods you might develop a sensitivity to or intolerance to as your damaged gut will make breaking them down hard and makes it easier to have a immune response to them.  Stick to whole foods for now, cook stuff soft and tender like stews, soups, tender roast, soft cooked eggs porridge. Make it easy on your gut, consider your intestines to be carpet burned or raw...avoid spices, rough abrasive foods, acidic foods.

You might need to supplement for awhile with B-vitamins, Magnesium, vitamin D etc. with the damage your only absorbing a fraction of then nutrients you eat.

[cyclinglady]

Ennis offered excellent advice and insight.  I do not think I can add more except that with time, you can heal.  Six months is such a short time.  It takes most celiacs a year or more.  Why?  dietary mistakes are made.  That is normal!  You have a lot to learn.  But it gets easier, I promise.  You can get well.  Odds of you getting refractory celiac disease are super, super rare.  In fact, many GI’s were misdiagnosing celiac patients with refractory celiac disease.  It turns out that the majority were just getting gluten exposures.  I guess the average GI think eliminating gluten is easy and that you can master it in just a few weeks.  

Hang in there.  No more bloating.  That is a sign of healing.  ?