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The first two months have been brutal and I think I’ve been doing it wrong

Louie17

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Louie17 Newbie
Louie17
Posted

So I was diagnosed with celiac disease about two months ago . I changed my diet completely to only gluten free products and when I would eat out I’d ask if it was gluten free. They would mention it might be cross contaminated, I thought it was no biggie and boy o boy was I wrong. Here we are thanksgiving day and I’m suffering so bad. I’ve used the restroom about 10 times and it’s been all water. Is this correct? I’m I still contaminated ? Am I having withdrawals? 

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Jmg Mentor
Jmg
Posted
7 hours ago, Louie17 said:

So I was diagnosed with celiac disease about two months ago . I changed my diet completely to only gluten free products and when I would eat out I’d ask if it was gluten free. They would mention it might be cross contaminated, I thought it was no biggie and boy o boy was I wrong. Here we are thanksgiving day and I’m suffering so bad. I’ve used the restroom about 10 times and it’s been all water. Is this correct? I’m I still contaminated ? Am I having withdrawals? 

Hi Louie and welcome :)

Sorry you're feeling poorly.

Although some do experience it, it's more likely some cross contamination than withdrawal from gluten. You're learning the hard way that the longer you go on the diet the more sensitive your body becomes to even tiny amounts of gluten.

For now, stay hydrated and try to replace the salts etc that you will be losing. In the UK we have this product: Open Original Shared Link you may have similar there?

Learn more about the diet here: 

Best wishes

Matt

GFinDC Veteran
GFinDC
Posted
On 11/23/2017 at 6:49 PM, Louie17 said:

So I was diagnosed with celiac disease about two months ago . I changed my diet completely to only gluten free products and when I would eat out I’d ask if it was gluten free. They would mention it might be cross contaminated, I thought it was no biggie and boy o boy was I wrong. Here we are thanksgiving day and I’m suffering so bad. I’ve used the restroom about 10 times and it’s been all water. Is this correct? I’m I still contaminated ? Am I having withdrawals? 

Hi Louie,

Welcome to the forum! :)

It's true, you probably are doing the gluten-free diet wrong.  The gluten-free diet is a huge change for many people, and it can take sometime to learn it and how to avoid all the places gluten can hide in foods.  Really I consider the first 6 months a beginners learning phase.  Doing a major diet change that can affect your health so drastically is not a simple thing.  It's not as simple as adding a pill or taking a shot to cure a disease.  There is no cure for celiac disease and the best treatment is the gluten-free diet. 

Celiac disease is an immune reaction in our bodies and our immune systems are pretty intense fellows.  They don't take breaks or days off and mount a sustained defense against invading bad guys, like bacteria, antigens and gluten.  That immune response can last 3 months or more as the immune cells live and continually react to bad things.  Like our poor guts! :(

Anyhow, recovery from celiac disease takes time, and 18 months is not unusual.  Also recovery can be an up and down process not a straight line up.  The quickest recovery is probably made by eating a simple diet of whole foods and avoiding wheat, barley, rye and oats.  Plus avoiding most processed foods and dairy.  Try to cook most foods you eat yourself, and look for foods at the grocery with 3 ingredients or less.  Remember, you may be low on certain nutrients and be unable to absorb them correctly for awhile.  So recovery can be slowed by that.  Over time as your gut heals your body can also heal and recovery can happen.  We need to treat our guts gently at first so they are not irritated any more than they already are.  So spicey foods are best avoided for a few months.

The gluten-free diet gets easier in time and you begin to learn to listen to what your body is telling you.  In our case if we eat right our bodies can be healthy and strong.  If we skimp or cheat on the gluten-free diet we set our healing process back.  It's not a weight loss diet it is a medical diet.

Some people find digestive enzymes helpful also.  You may find peppermint tea helpful for gas.

Awol cast iron stomach Experienced
Awol cast iron stomach
Posted

EXcellent advice from both jmg & gluten-free in D.C. . They have both helped me immensely.

I initially did it wrong too based on being diagnosed IBS 20 plus years and becoming progressively worse with time . As gluten was my issue. I then did as we should not ( went self diagnosed gluten-free out of desperation , had incorrect info , since I didn't join this forum . I was never tested and I didn't feel I could consider myself a real celiac. 

Well other than research studies and this forum there is a lot of inaccurate info out there that are landmines for this diseases lost / wandering souls.

Once I got to a real celiac clinic after numerous decades of misses. They and this forum helped me realize I had gone so long undiagnosed that I had multiple symptoms of AI's and multiple intolerances accumulating in environmental MCS too?

That is ok and so are you.

This community will get you well if you follow their sage safe advice. I am still healing post challenge a year. I have learned it is not ok to eat outside my home as very few places understand cc. Plus even if gluten-free I must avoid cc by corn. It is in a ton of gluten-free foods.

we are all different but on the same path & our a community.

please don't be too harsh on yourself, you have been through enough. Finish diagnosis, then focus on the links they gave you above. You are in good hands.

squirmingitch Veteran
squirmingitch
Posted

You can't just ask if it's gluten free. Eating out is full of landmines. I'm sure you've been getting cross contaminated. You need to read the Newbie 101. It's of paramount inportance that you don't get glutened or cc'd!

 

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