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New To Gluten Free Lifestyle

Ramfan

By Ramfan
in Coping with Celiac Disease

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Ramfan Newbie
Ramfan
Posted

I am new to gluten free lifestyle but not new to the discomfort I have been dealing with for the past 10 years +. Just a brief history, had surgery for GERD and still had issues with my stomach afterwards. A few months after my surgery, I went to see my GI because not all my symptoms were alleviated, was told I had IBS and I changed my diet but saw no change, actually thought my problem increased. The last time I saw the GI was early this summer and was told that I might have an emptying issue and had a test performed but was told that I just needed to stay away from foods that caused bloating and the other issues I have been dealing with for years. Finally my primary informed me that I might be one of those individuals who tests negative and we tried another test in which I tested positive. As a side note, that week ran into an individual who told me they knew what I was going through because they had the same problem 10 years ago. Since starting a gluten-free diet, there is a major difference but when I ingest something with hidden gluten; sometimes reaction time happens within an hour, while other times it can take hours but the end results are the same. I have so many questions but first I would like to know if there is a relationship with food dyes. If there is a relationship, which food dyes should one avoid.

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Ramfan Newbie
Ramfan
Posted
  • Author

Forgot to add that three years ago was diagnosed with tumid lupus.

eatmeat4good Enthusiast
eatmeat4good
Posted

I have not heard of those with just Celiac being sensitive to food dyes.

However, there are some of us who are also Salicylate sensitive or allergic.

If this applies to you then you would also have a problem with food dyes.

Especially yellow and red dyes.

Preservatives are also a source of salicylates.

Benzoates are notoriously reactive for those with salicylate sensitivity.

Annatto, Tartrazine and Yellow #5 and #6 are especially problematic.

Unless you suspect you are reacting to food colorings or preservatives, you should be able to eat them.

Something like 1/100 are sensitive to Salicylates. But it is an extremely limiting diet and since you are just learning to be gluten free, you might focus on that and keep salicylates in mind as a secondary intolerance.

here is a site if you are interested.

It lists a lot of chemical names for salicylates that have to be watched for if they are a problem for you.

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Ramfan Newbie
Ramfan
Posted
  • Author

Thank you for responding and I should have clarified my situation better. Since going gluten free and shopping for gluten free items, my stomach issues have resolved but I am wondering about other things that can trigger the same reactions that I have been dealing with : bloated stomach, gurgling, gas, constipation, diarrhea, fatigue, what I like to refer to as brain fog. This past weekend attended a volleyball match and decided to have popcorn from the concession stand,what a mistake. On Sunday was at the local farmer's market and decided to have grape flavored snow cone; again another big mistake. Before each of these bad choices, I had a healthy gluten free breakfast and lunch, felt fine but afterwards here comes the bloating and the rest of the night was miserable. As for today, I am no better off and have not eaten because of the discomfort.

I will look into salicylates as my third intolerance, I also have major issues with MGS that can last up to 48 hours.

Thank you again.

Jenniferxgfx Contributor
Jenniferxgfx
Posted

Dairy can cause these problems too and a lot of celiacs can't (at least temporarily) digest dairy until they heal up.

Dairy makes me all kindsa miserable though. Lactose, casein, and whey, no part of milk is safe for me and they sneak it into all kinds of foods.

It could definitely be dye though. Too much colored food makes me feel BLEH. But who really needs dye anyway??

Welcome to the group!

Ramfan Newbie
Ramfan
Posted
  • Author

Thank you eatmeat4good and Jenniferxgfx, your suggestions makes a great deal of sense and looking at the websites on salicylates and gluten, I have my work cut out for me. Makes me wonder how we can make ourselves ill by all the additives in our foods.

Bubba's Mom Enthusiast
Bubba's Mom
Posted

It's possible you have a secondary intollerance? I found soy bothers me.

We went to an outdoor festival this past weekend. I thought I could get the kettle corn, but when I asked what kind of oil they were using it was soy. :( So I couldn't have it.

Since both of the foods you mentioned bothering you contained corn ingredients, that might be a problem for you?

Figuring out all of this can be tricky. Try keeping a log of what you eat and note any symptoms you get. The hard part is that sometimes a reaction is right away, and sometimes a day or two later.

There aren't any good tests for some of these sensitivities, other than your own detective work. :(

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Ramfan Newbie
Ramfan
Posted
  • Author

Bubba's Mom,

Your suggestion of keeping a log is an excellent idea and I will start my log tomorrow. Today I cannot eat anything because of the bad choices over the weekend. I will need to find inner strength to overcome years of slowly contaminating myself and as a friend mentioned earlier, "if you can get past the first 21 days, you will succeed."

Thank you all and I am so glad I found this website.

pricklypear1971 Community Regular
pricklypear1971
Posted

Salicylates. Made me break out in a DH rash, neuro symptoms for 2 weeks. I don't typically get stomach issues, but have experienced a few intermittent ones after going gluten-free.

I'm never quite sure why or what but I know sals like colorings, preservatives literally make me nuts, break out in a rash, and have anxiety and brain fog. In short, sick sick sick.

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      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
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    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
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      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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