Unclear Diagnosis and Lactose

[mrsfunkway]

Hello,

Around the end of October I was diagnosed with Celiac after the GI doc did an endoscopy and found evidence of flattened villi. So I have been gluten-free since then. However just before Christmas, I had a follow up with the GI dr and he said my biopsies came back negative for Celiac? He said if I haven't felt better I could stop the gluten-free diet. But since signs of improvement don't really show up until about 6 months (is that true?) I've decided to stay gluten-free until April or May just to see.

However, a week ago I started feeling really ill whenever I ate. 95% of my meals were not in danger of gluten or CC as I prepared them at home. But then I think I finally realized the common theme with my meals - dairy. The first meal that made me sick had a greek yogurt sauce, a slimfast shake had milk in it, ranch dressing with some buffalo wings, and a corn tortilla quesadilla. Nausea, getting really warm, nearly immediate gastric dumping, etc. I thought I had gotten the The reason I say "I think I finally realized" is because it would be an awful intensely sensitive lactose intolerance - I'm getting a similar yet weaker reaction to < tsp of butter and possibly milk in baked goods. Which might also explain why my probiotics haven't helped ("may contain traces of dairy"). I also can't eat a lot of rice at the moment because it causes diarrhea. 

Can lactose intolerance really be that severe? Could it be caused by my possible Celiac dx or something else? I had also been dx'd with severe gastritis. The acid reducers have helped with some of those symptoms (abdominal tenderness/cramping). This whole diet change has caused a whole lot of stress and sadness. Rice and cheese were my big staples once gluten was cut out. And now I can't even eat them without distress!

[Zodi1993]

Hi Mrsfunkway, 

I might suggest getting tested for EOE. It's a biopsy done by your GI doctor. If you test positive then it basically involves eliminating 6  major allergies, milk, eggs, wheat, soy, peanuts/tree nuts and seafood (fish/shellfish) from your diet. My daughter has Celiac Disease and is allergic to wheat, yeast, shrimp and sesame seeds. Her acid was so bad that she was afraid to eat. After her EoE diagnosis she has cutback on most of her dairy (almond milk is a good alternative) and eggs. She does take a Gerd medicine that was prescribed by her allergist 20 minutes twice a day prior to eating. It seems to be helping and she has been trying to increase her niacin as that helps with burping. 

The EOE is was a shock but yeast seems to be the hardest thing to remove from her diet. It's more of a trial and error process and keeping a food diary or log is extremely helpful in pin pointing what triggers your acid. 

Welcome to the forum ?

[ravenwoodglass]

It is not uncommon for folks with celiac to have nasty problems with dairy until they heal. The tips of the villi create the enzyme that helps us digest dairy and when celiac damages those tips dairy will cause issues.  Many are able to add dairy back in after they heal. I was happy to be one of those. there are some, however that react to the protein (casien) rather than the sugar (lactose) and I think they may be less likely to be able to do dairy products.  When you have healed you can try adding dairy back in starting with hard cheeses like cheddar.

[cyclinglady]

What?  You had positive a positive celiac blood test, positive endoscopy (your GI said that visually it looks like celiac disease), but your biopsies were negative.  The small intestine when stretched out is vast.  So easy to miss damaged areas.  Your GI knows this, but from my research GI's do not want to diagnose unless they see Damage in the biopsies.  I guess they think that giving up gluten is too horrible to contemplate!  

Consider staying the course (gluten-free diet) and give up dairy for now.  Those wings?  Ugh!  Way to spicy for me when my gut is not healed!  That is just one example.  Stick with simple Whole Foods until you see progress.  

Yes, a lactose intolerance could cause those symptoms.  So could gluten and other foods like corn or soy.  Look to your diet.  In the beginning it is easy to get gluten exposures.  A gluten-free diet has a huge learning curve.  Remember, it takes most of us up to a year to heal.  We all experience set-backs along the way.  

Ask your GI to re measure your antibodies to see if the diet is helping.  That can be very telling.  

Finally, grief is normal.  celiac disease sucks!  So, expect to go through the classic levels of grieving.  It is normal!  But I can tell you it does get better!  

Hugs!