Struggling To Get Better, Loads Of Different Foods Are Making Me Ill

[Sparky123]

Hi guys,

Newbie here in need of help. From September 2011 - September 2013 I was very unwell, completely housebound with chronic fatigue, anxiety, and loads of other stuff. However 3 months ago in September this year I went gluten free and started feeling a bit better immediately (big woop!). My fatigue was better, I stopped getting groggy hot flushes whenever I exerted myself, and started sleeping better.

I got tested for Celiac Disease but came back negative. I definitely have a gluten intolerance though. Also we recently found out my Dad, sister and brother are all gluten sensitive aswell.

However 3 months in to being gluten free, I've made little progress as I keep getting ill. It seems that any food that is processed makes me 'ill' how I was in the years before. Gluten free bread, curry, chocolate, cereal bars, pineapple, cheese, dry herbs and spices, to name a few. As i said, the rest of my family have recently found they're gluten intolerant aswell, so there is only gluten free food in the kitchen. We've also replaced all cooking utensils to reduce the risk of cross contamination.

I don't know what to do. Has this happened to anyone else?? Any help at all would be really appreciated.

Thanks,

Mark

[lmckenna01]

Hi Mark,

 

I'm also new to this site and was diagnosed with Celiac Disease about eight months ago.  I feel that I am doing everything to keep myself on a gluten-free diet but I also face setbacks, especially when eating out.   This holiday was especially difficult.  I ate at Longhorn's on Christmas Eve and they assured me that everything was gluten free.  I woke up on Christmas Day and was very ill.  I dreaded eating for the rest of the day.  On the day after, I found I had contracted the stomach bug from my nephew so I was "ill" for the next four days.  I can't tell if I am suffering from the stomach bug or if it's the Celiac. 

 

I can relate to your frustration as I am going through the same issues.  I didn't get much help from the nutritionist that my doctor sent me to, and so I have been reading all I can find, trying new recipes and basically just eating as plainly as I can. 

 

I wish you a healthier 2014.

[cyclinglady]

Ugh, healing from celiac disease can take months to several years, especially if you have food intolerances/allergies!

My husband is lucky. He can eat everything except chocolate (intolerance) and gluten (no formal diagnosis). I have celiac disease but identified most of my intolerances and allergies long ago. My list includes garlic, milk (allergy), nuts, mushrooms, and eggs. Those are the big offenders. You are probably low in digestive enzymes, so milk products etc. should be avoided until you are healed.

Since going gluten-free in March, I have developed an intolerance to Xanthan gum which causes gluten-like symptoms for me. I bake now using Xanthan gum subs. Unfortunately, I am visiting my folks and can no longer purchase gluten-free goodies off the shelf because most contain Xanthan gum. Something to consider since you are having issues with bread. I hope to overcome this intolerance in the next year.

Take care!

[1desperateladysaved]

Yes, I have trouble will processed food.  I am doing meats, vegetables, fruits, and nut flour baked goods.  Basically my diet is SCD( Specific Carbohydrate Diet.)  One can google that online.  Go for good oils such as coconut oil, olive oil, and butter if tolerated.  I basically cook from scratch and produce my own food as much as I can.  I just feel so much better if I do it myself.

[cyclinglady]

Hi Mark,

 

I'm also new to this site and was diagnosed with Celiac Disease about eight months ago.  I feel that I am doing everything to keep myself on a gluten-free diet but I also face setbacks, especially when eating out.   This holiday was especially difficult.  I ate at Longhorn's on Christmas Eve and they assured me that everything was gluten free.  I woke up on Christmas Day and was very ill.  I dreaded eating for the rest of the day.  On the day after, I found I had contracted the stomach bug from my nephew so I was "ill" for the next four days.  I can't tell if I am suffering from the stomach bug or if it's the Celiac. 

 

I can relate to your frustration as I am going through the same issues.  I didn't get much help from the nutritionist that my doctor sent me to, and so I have been reading all I can find, trying new recipes and basically just eating as plainly as I can. 

 

I wish you a healthier 2014.

Sorry to hear about your glutening and possible flu.

I have been away from home for over a week. Luckily, I have not been glutened yet! My extended family cringes when I request to see the head chef. I find that I do better with nicer restaurants, but again it all depends on the food preparers and whether or not they will follow procedures. I usually promise to give them a good review on Yelp or Find Me gluten-free.

Hope you feel better soon.

[bartfull]

Maybe it's dairy. A lot of us have trouble with dairy at first. The only way to really find out what's bothering you is to do an elimination diet. Start with whole foods you know are safe - meat, veggies, some fruit, and maybe rice. Once you are really feeling good, add a food. Give it a week, then add another. It seems to take forever, but it's the only reliable way to figure it out.

[Sparky123]

Thanks for all of your replies! Very helpful indeed. Comforting to hear other people going through similar things, and I'm not the only one.

Coming off dairy is a good idea. I've had bad reactions to chocolate, cheese and butter so that could well be one of the issues.

I'm hoping that the reason I can't cope with anything that's processed is because I'm still quite fatigued and have a lot of healing to do. Guess my body just can't cope with it at the moment. My doctor always told me my illness was M.E, so I'm just hoping that my energy levels eventually improve and I make a full recovery.

[Constantly Glutenized]

Hi! Im a newbie to Celiac as well with only being gluten-free for 8 months. I was doing fairly well managing symptoms by using Align (priobiotic) and Zantec. I still have setbacks especially when dining out but I found this Christmas very difficult. I am a glorified Chocoholic but really struggle with what we can have and what we cant. It seems all my faves were on the "naughty" list! I also went off the Align in favour of a cheaper version ( as all the ingredients looked about the same) and really noticed the difference. I was sick all through Christmas and its taking all this last week to feel normal again! Uggh! You are definately not alone in this struggle and you need to come to grips with the fact that it may take over a year to heal! Good Luck in 2014 with the diet!

[Wenmin]

Hi!

 

Its' been a long time since I've logged into this site.  When I saw this topic I felt I had to reply.  I've been off of gluten about 5-6 years.  I was doing really great, but occasionally felt something wasn't right.  One morning woke up with hives from head to toe.  I went to the hospiital and they said to see an allergist.  I made an appointment and went to the allergist.  They did the testing and I did not show any signs of allergies.  The sent me back to the waiting room to wait to see the doctor, and while waiting for the doctor, I broke out in hives all over my chin.  The doctor called me to the back and told me that I was allergic to something but told me he couldn't tell me whet.  His exact words were, "Well, we know you are allergic to something, so keep doing what you are doing and you should be ok."  So, again I took things into my own hands and started an elimination diet.  I found out that I was allergic to white potatoes(and all potato flours) and all corn products. 

 

I thought I was cured when I found out that I had Celiac (officially undiagnosed by a doctor) then I started with these new allergies.  My point is, try an elimination diet and you might find that you are having issues with other foods as well.  Never in a million years did I ever think I would develop other allergies while being denied gluten.  Unfortunately I was wrong.  However, I have managed to find things that I can eat.  Hang in there it gets much easier as you go.

 

Wenmin

[w8in4dave]

When I found out I was Celiac I thought I was home free, Then I started having problems again, Big "D" and felt like I was getting Glutened. Found out I was High Fructose Corn Syrup intolerant and corn anything intolerant. Now I am having problems with my face swelling , leg cramps, hair falling out, I have to go see my Dr. It may be Hashimoto's .. I am almost certain it is but I will need a DX .. Good luck and I hope you find out what it is. 

[GFinDC]

Hi,

 

Your gut needs time to heal and start absorbing vitamins and minerals correctly.  It also needs to establish a new bacterial balance.  Gut bacteria help us digest food and even make vitamins.  So it's important to work on getting your gut flora improved.  Things can get really out of whack in that department with  all the celiac damage.  Plus as the villi lining the small intestine heal, they create an expanded surface area for bacteria to colonize.  So lots more bacteria suddenly.  That's why avoiding sugars and starches is helpful and taking probiotics.  You do want bacteria, but the right kind, not the nasty ones.

 

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.
Get your vitamin/mineral levels tested also.
Don't eat in restaurants
Eat only whole foods not processed foods.
Eat only food you cook yourself, think simple foods, not gourmet meals.
Take probiotics.
Take gluten-free vitamins.
Take digestive enzymes.
Avoid dairy if it causes symptoms.
Avoid sugars and starchy foods.
Avoid alcohol.
Watch out for cross contamination.

Helpful threads:

FAQ Celiac com
https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101
https://www.celiac.com/forums/topic/91878-newbie-info-101/

[Sparky123]

Hi guys,

I've changed my diet now. Only eating extremely plain foods, and will be doing the elimination process that's been mentioned. Only been a few days, but the severe grogginess I've had for the past few weeks seems to be lifting which is good.

Thanks for all of the helpful info. I got tested for Celiac a month after I started the gluten-free diet, so came back negative as expected. Doesn't really matter much to me though, I know I can't eat gluten and that's that!

Thanks again, I'll no doubt be chirping up on this forum over the coming months.

Sparky

[1desperateladysaved]

Thanks for the update.  I hope you start raving about having energy very soon.  Good work and keep going!

 

D

[cyclinglady]

Good luck! My husband went gluten-free 13 years ago (no formal dx) and has been successful! So, I know you will feel better soon!