Worsening of Symptoms Upon Going Gluten-Free

[lehum]

Hello Everyone,

I'm happy to find myself here on Celiac.com and in this community. 🙂

I was diagnosed with Celiac at the beginning of February of this year (about 1.5 months ago) and have been eating gluten-free since.
Though some days certain symptoms seem alleviated (the lifting of brain fog and lessening of anxiety, etc.), other symptoms seem to have escalated since cutting gluten out of my diet.

I have been careful about the products I buy and potential cross-contamination, I have experimentally cut out lactose for a time too, and I am feeding myself with mostly healthy fats; proteins like tofu, lactose-free yogurt and cheese, chicken, fish, and sometimes legumes and beans; fruits and vegetables; and carbs like quinoa and rice. 

I am still experiencing a variety of symptoms like excessively needing the bathroom, stool which is fatty and contains undigested foods, stool which sticks and or floats, intense bubbling in my stomach, extreme hunger even when having consumed large portions, etc. Some symptoms seem worse than they were while I was still eating gluten, i.e. the fatty stool containing undigested food and stomach bubbling. 

I have also undergone tests for my thyroid and pancreas and both were completely normal. It might be worth mentioning that I am 27, have experienced various digestive woes for years, and was told by the doctor that the damage to my small intestine was relatively advanced.

Could it be that I simply need patience at this point? Does it seem normal that 1.5 months into the diet, such symptoms might still be occurring?

Very grateful for your input and advice! Thanks in advance.

Warm wishes,

L.

[trents]

If gluten is the only problem, you should be feeling better by now.

You might want to look into SIBO (Small Intestine Bacterial Overgrowth) and a FODMAP diet.

Also, are you still eating oats? About 10% of celiacs react to oat protein the same way they do gluten in wheat, barley and rye.

[Scott Adams]

In addition to oats, many celiacs, at least temporarily, have issues with casein and possibly other foods. I had 5-6 temporary food intolerance issues that mostly went away after being gluten-free for 1-2 years.

[CMCM]

You likely have additional food sensitivities.  With dairy, lactose isn't the only problem.  The casein protein in dairy has a protein structure that is similar enough to gluten that your body can "think" it's also gluten and cause the same antibodies to react and cause the physical discomfort as gluten.  When I got tested for celiac antibodies via a stool sample test, the lab also did a casein test because the two were so often a problem.  It came back positive for antibodies to casein as well as to gluten, and the doctor said I should never eat casein again.  That said, I did eliminate dairy for about 9 months and then tried it again in small, infrequent amount and I got away with it for the most part.  However, I love yogurt and never have been able to tolerate that at all, not sure why it would be different.  At this point in time, I've had to eliminate dairy entirely.  In any case, think about other food intolerances and try to figure out what they are.  Gluten sensitivity is rarely if ever the sole food issue you have, so be on the watch.

Edited March 24, 2021 by CMCM

[Suzisqueue]

Sorry to hear you're still having issues, especially after 1.5 years on the diet. Your disease sounds similar to what I experienced, however my diagnosis of Celiac disease was made by an endocrinologist... not a G.I. doc, his suggestions to me for treatment and the explanation of the disease were quite different. Celiacs is a "whole body disease", doctors who do not understand this are not good Celiacs doctors. Endocrinologists are the only other doctors than gastroenterologist who are qualified to make a diagnosis of celiacs. I never had an intestinal biopsy, he surmised my Celiacs from other symptoms.

HERES THE POOP DISCLAIMER here (lol) if it's TMI for some folks. The doc and I spent a great time talking about poop. What's going on with the floaty turds is that Celiacs not only does damage to the intestines, if it has been prolonged, there will also be damage to the "Endocrine Pancreas". The pancreas has two ends, the "endocrine pancreas" and the "exocrine pancreas". The endocrine pancreas' job is to excrete enzymes to the stomach to help us digest food, fats, proteins, starches... and complex carbs, the exocrine pancreas' job is to excrete insulin into the blood stream. Damage to the exocrine pancreas causes diabetes, damage to the endocrine pancreas compromises our ability to secrete the right enzymes to digest our food. Celiacs also damages our adrenal glands. Then if we're not getting proper digestion in the guy, the microflora balance is thrown off, and the gut brain connection affected, along with leaky gut.... then you get all the funky psych/neuro stuff (anxiety, panic, anger, mood swings). 

He suggested I take an enzyme supplement you can buy over the counter "Pancreatin" and take that before meals. He also suggested I completely avoid all "trisaccharides" (complex carbs), and that my diet mainly consist of monosaccharides, disaccharides, vegetables and protein. For the carb in your diet stick to monocot grains like quinoa, millet, amaranth and other gluten free flour options like tapioca (may favorite, make pizza!!). Try to stay away from rice (it still has glutens, although different from wheat, the stuff they do with the GMO's, and most the gluten free on the shelf is rice flour based, avoid sugar like it is the plague!

Taking a supplement like Pancreatin might help you with the fats and casein. Although my diet also excluded things like rice... I've slowly been able to eat more of it. Deal for me is awful Candida in my gut when I eat too many carbs, and then all sorts of weirdness around that.

I just recently used my 23andme dna at this place that put that information through their algorithm and do a whole medical analysis for $99 which was really reasonable (I used this to give to my psych doc for the full MTHFR polymorphism analysis). This report gave me a whole bunch of terrific information on my nutritional profile and supplements I should be taking for my genetic make up. One thing it suggested was additional Choline and B6 among other things. I've been taking Acetyl-Choline supplements and B6 - and It has so incredibly helped with the brain fog! OMG, it was a huge relief to discover my brain was so starved for these nutrients.

Good luck to you!! Read everything you can to understand this disease! You are your own best doctor and advocate!  : )

Sue T.

some good books: 

The Second Brain: A Groundbreaking New Understanding of Nervous Disorders of the Stomach and Intestine

Brain Allergies: The Psychonutrient and Magnetic Connections

 

 

[lanlanonearth]

I'm no expert but I wonder if it could have something to do with your high consumption of grains and beans? You could look into phytic acid and anti-nutrients which describes the substances that plant seeds (grain, beans, nuts) produce that interfere with human absorption. You could also look into the GAPS diet as something to experiment.