Gut is better, everything else is worse

[RCFR]

Hello, I have been very recently diagnosed with celiac disease. My biopsy results, which was not looking for celiac, came back with flattened villi and inflammation in the duodenal bulb. Today I finally got the antibody test back, and it was positive (just barely) for celiac. I had thought I had something called Mast Cell Activation Disorder but celiac could explain my ongoing GI issues (not severe but persistent), hives, dermatographism, flushing, itchy (not DH) skin, and episodic fatigue/pain. Right?

Anyway, I stopped eating wheat-containing foods as soon as my blood got drawn, and implemented cross-contamination procedures at home soon after. I have been sticking with whole foods and foods with simple ingredients and trying to eat a balance of proteins, grains (corn and rice), fruits, nuts, seeds, dairy, veggies etc. A little sugar for treats but not tons. 

After a couple days completely gluten free I started feeling HORRIBLE. I haven't been to work all week. Exhausted, achy, dizzy, brain fog. I keep thinking I'm doing better, then do a little light housework and have to lie down again after a few minutes. My stomach feels better, so that's good -- it's weird not to be nauseated all the time (I'd gotten used to it). But I am having terrible chronic fatigue / fibromyalgia - like symptoms. Is this really just a reaction to cutting gluten? How long until I will feel like I can go to work again? Shouldn't I be at least slightly better instead of horribly horribly worse?

 

[Ennis-TX]

This varies in cause, there is such a thing as gluten withdrawal. Literally like withdrawal with and additive drug full on to the letter, yes some people experience this and I did to some degree.
Another concept is you have not got the diet down. IE if you just change to gluten free breads etc. and not a whole foods diet your going to have issues. Most gluten products are enriched with B-vitamins and other things. Gluten free beads, crackers, flours are not enriched and lacking these. IE you have to eat whole foods like leafy greens, meats, nuts, seeds, and keep a varied and balanced diet. From another point your damaged intestines could have absorption issues and the gluten foods sprayed with multivitamins were just getting you by. So you might consider seeing if you low in anything and supplementing, common ones are Magnesium, all b-vitamins, Vitamin D, Iron, etc.
Also note that once you start a gluten free diet, reactions to accidental gluten exposures are normally much worse.
Please see the Newbie 101 section to be sure on CC issues, some will surprise you.
https://www.celiac.com/forums/topic/91878-newbie-info-101/

 

Edited November 13, 2019 by Ennis_TX
Forgot some info

[RCFR]

59 minutes ago, Ennis_TX said:

This varies in cause, there is such a thing as gluten withdrawal. Literally like withdrawal with and additive drug full on to the letter, yes some people experience this and I did to some degree.
Another concept is you have not got the diet down. IE if you just change to gluten free breads etc. and not a whole foods diet your going to have issues. Most gluten products are enriched with B-vitamins and other things. Gluten free beads, crackers, flours are not enriched and lacking these. IE you have to eat whole foods like leafy greens, meats, nuts, seeds, and keep a varied and balanced diet. From another point your damaged intestines could have absorption issues and the gluten foods sprayed with multivitamins were just getting you by. So you might consider seeing if you low in anything and supplementing, common ones are Magnesium, all b-vitamins, Vitamin D, Iron, etc.
Also note that once you start a gluten free diet, reactions to accidental gluten exposures are normally much worse.
Please see the Newbie 101 section to be sure on CC issues, some will surprise you.
https://www.celiac.com/forums/topic/91878-newbie-info-101/

 

Thank you! I Just started wondering about vitamin deficiencies. I have previously (pre-celiac diagnosis) had low D and low B12... I'm trying to mostly eat whole foods--a varied diet as much as possible, but you are  pointing out something I hadn't considered -- the fact that breads would have been enriched with some vitamins. SO helpful. Thank you. 

I think I have the hang of avoiding cross-contamination after many podcasts and reading online to get tips from people with actual celiac. I'm still a bit stunned that this has been the problem all along. Thank you as well for the link!

[cyclinglady]

You can still have Mast Cell Activation issues as well, any other autoimmune disorder or just get sick from a virus.  Your symptoms may not all be due to celiac disease.  However, focusing on healing from celiac disease should be your first priority.  

I noticed you mentioned wheat foods.  Celiacs react to barley and rye and sometimes oats.  It is best to avoid oats for the first six months and then add in only certified (field dedicated) gluten-free oats.  

Research all that you can.    It is your best defense!  Welcome to the forum.  ?

 

 

[GFinDC]

I thought I would feel fine after short time gluten-free.  It turned out to take quite a while to get much better though.  Slow improvements were the name of the game.

You might try cutting out diary from your diet for a few months now.  Celiac damages the villi that produce an enzyme (lactase) which digests dairy sugar (lactose).  So you may be lactose intolerant for a few months until you heal some (grow new villi).

While you are healing a good amount of protein can be helpful.  All those villi that need to regrow take nutrients and energy.  That energy is best gotten from protein, meats, eggs, nuts and some plants.  Avocados, peas and peanut butter are a good choice for protein.  But try to avoid eating the same things every day.  Sometimes our irritated guts can start reacting to other foods we eat frequently.  Then we can get additional food intolerances beyond wheat, rye and barley.

[RCFR]

This is all so helpful! AND I think I might have eaten gluten on Saturday and just now realized it. SAUSAGE -- from a restaurant. I was so hungry. That would make sense because I started feeling terrible that day. OMG I am so grateful to have joined this community!