gluten-free 3 years but constantly ill...

[CherylA]

Hi all, I was diagnosed just over three years ago and have been on a very strict gluten-free diet since (apart from the odd time where I've been caught out) but I've noticed that although I take high strength vit D and B tablets, have calcium/zinc drinks and eat loads of vegetables...I'm getting ill every other month...does anyone else suffer like this?  I'm wondering if this is just life now after been suffering for over 15 years before diagnosed or whether maybe I'm suffering from some sort of malnutrition?  Any help would be appreciated. Thanks

[Ennis-TX]

"Odd time out" A single exposure can cause continuous damage for around 6 weeks til the antibodies come down.
It took years to cause the damage and it will take years to heal. Some studies show it can take 2 years for the gut to heal completely.

Magnesium and iron are two more common issues, iron also need to be taking with vitamin C.

Try keeping a food diary.
https://www.wikihow.com/Keep-a-Food-Diary
Many celiacs often get other food intolerance issues, removing all but a few unseasoned foods and trying something then removing it with this protocol can find other potential issues...heck take a look at mine I had come up after my run. Common issues are dairy (damaged villi do not produce the enzymes to break it down), oats, soy, xantham gum, corn, nightshades, legumes, garlic, onions etc.

Enzyme issues and digesting foods can be issues also, sometimes added enzymes can help digestion and getting nutrients from your food.

Other AI disease and thyroid issues can also be common, you will need to get tested for them to fine out.

Is there a chance of potential CC issues? Some things are overlooked like eating out, cutting board, condiment containers, living with others that eat gluten and might contaminate you, shampoo, lotions, medications. etc.

[cyclinglady]

When was your last follow-up testing done for celiac disease? It should be done annually.  This will help you determine if you have an active celiac flare or if you should look for a new illness.  

http://www.cureceliacdisease.org/faq/how-often-should-follow-up-testing-occur/

All those vitamin supplements and fizzy drinks?  Are you sure they are gluten free?  Not sure if you are eating out, but I would stop until you are feeling better.  Avoid processed foods too until you see results.  

[francie]

I had a bumpy ride at first too. After first visit to celiac dietician, I cut out all foods they I wasn't 100% sure were gluten-free. I strongly recommend the  book "Food intolerances and Food Allergies" by Jonathan Brostoff. You an get it thru Amazon.  I ended up eventually figuring out I had intolerances to egg, corn (which is in everything!) all vitamin and supplements and even have all oral meds compounded as the knactive ingredients in meds are often  corn or milk based as well as gluten. I remember thinking later, if only someone had told me to just eat whole foods till healed  which I define as no prepackaged food, just actually natural food : produce, I ended up finding a butcher shop as grocery store meats always caused a reaction.  I gained way too much weight so watch gluten-free foods!

[roseann]

Hi. I read that you take vitamins...do you thoroughly check the labels to be sure they contain no gluten? Also don't neglect to reread labels on everything else once in a while. Keeping a strict diary may be of some help, making note of your worst days and what you may have ingested.

 

[cyclinglady]

I take no vitamins.  None.  I do eat a varied diet and according to my last repeat biopsy, I have healed from celiac disease.  If you eat a poor junk-filled diet, are getting glutened frequently, or have another GI issue (e.g. Crohn’s or SIBO), vitamins might be a good idea.  Your doctor can check you for deficiencies.  

I did take an iron supplement at the beginning.  I was very anemic per my lab tests.  Every doctor wanted to give me a blood transfusion.    It only took a few months for that to resolve.  

Just remember that supplements are processed and should  be carefully checked.  

 

[notme]

i have been gluten-free for about 10 years now and have finally FINALLY rounded the corner to where my villi are absorbing on a regular basis.  it took a whole lot of experimenting with digestive enzymes, probiotics, vitamins, etc, etc, etc....  now, lucky me, my b is good, my d is good <without supplements, which i was taking 50,000 iu 3x per week)  NOW I HAVE HIGH CHOLESTEROL ?

what finally worked for me:  i must have some kind of histamine buildup, so, i rotate my foods, ie:  if i eat chicken today, i wait 2 days before i have chicken again.  same with other foods.  i take 1/4 tsp psyllium husks for fiber, drink a ton of water, and wear my lucky socks.  my digestion is better than it's been in a very long time, but it was 25 years that i went undiagnosed.  so, maybe the longer the damage is being done, the longer it takes for everything to heal.  i thought i had every intolerance under the sun, but now i have added back nearly everything (except those pesky oats, which i love but they were still mad.  i hope they will love me back soon!!)

if you are getting cc'd, you're going to have to keep going back to jump street.  unprocessed foods and stop eating out until you get it figured out.  i just about gave up and said:  this is my crappy life and i will never heal.  but, i did.  (lolz, evidently, just in time for my heart attack ? yay!)

good luck!  i hope you find some answers ?

[cyclinglady]

Notme!  Are you serious?  Did you have a heart attack?  

 

 

[frieze]

i think that was a reference to the increased cholesterol?

[selectivefocus]

I didn't read any above replies, but you probably have other intolerances that are going unchecked. We all do. Right now I feel as though I have been glutened (liver pain, neuropathy, lethargy, just feeling really crappy) and I'm pretty sure it's from brown rice pasta and cheese. My oldest daughter tested positive to the top 8 allergens after going gluten free and she can no longer eat eggs and corn. You need to be hyper aware of what you are putting in your mouth and how it makes you feel. Just because it is gluten free does not mean it is good for you. I can't tolerate brown rice, tapioca, any gums, eggs, red meat, most dairy, and I have a salicylate intolerance. Gluten free is not cut and dry, especially if you rely on prepackaged foods. 

https://scdlifestyle.com/2012/04/the-toxic-truth-about-gluten-free-food-and-celiac-disease/

[notme]

On 11/13/2018 at 5:53 PM, cyclinglady said:

Notme!  Are you serious?  Did you have a heart attack?  

 

 

lolz NO - i'm sorry if i made it sound that way!!  i just have mega-high triglycerides and i hafta stop eating full fat stuff and watch my sodium.