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Dairy Free

Guest gfinnebraska

By Guest gfinnebraska
in Coping with Celiac Disease

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Guest gfinnebraska
Guest gfinnebraska
Posted

I have been gluten free for years and my family fully supports that I have celiac disease and can't have gluten. Well, recently, I have become aware that I also have to avoid dairy. Will I have to avoid it forever?!!?? I don't know. Only time will tell. WELL, I found out that some of my family members think it is "all in my head." That statement bothered me SO much that I thought, fine, I will eat dairy and test it for sure! Well, after days of being SICK... I know it isn't "in my head." How do you handle people thinking you are just "on another kick"???? Any advice would be helpful. Thanks!!

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gf4life Enthusiast
gf4life
Posted

I ignore them. I have found that when I try to explain to them what gluten/dairy did to me they didn't really want to know. They have already decided that it wasn't real, it is "all in my head". So who cares. It's my body and I have to take care of it.

Some people (especially family members) have started asking me questions. They still don't really get it, but they are at least trying to be understanding. Last night my in-laws came over and brought chicken sandwiches and fries from Burger King "for the kids". Well all of my kids are gluten-free and dairy free. When I told my MIL that the kids couldn't eat it she looked at me like I was crazy and asked why not? :blink:

Well then today she was asking more questions about how I was able to loose weight. She doesn't understand about the diet being lifelong, or about the consequences of a gluten accident. She still keeps thinking that it is glucose we have to avoid. I get that alot. So many people are aware of diabetes and glucose, and get it mixed up with gluten.

On a side note. I was off ALL dairy for 14 months and have recently introduced it back into my diet. I am not having any ill effects, except from some dairy products that add guar gum into the product like sour cream, cream cheese, etc. I will be letting my kids try dairy next month at their one year anniversary of being Gluten-free Casein-free. I am hoping they all tolerate it well, since being gluten-free only opens up a whole world of other foods to us!

God bless,

Mariann

stef-the-kicking-cuty Enthusiast
stef-the-kicking-cuty
Posted

I tell them: "It's not in my head, it's in my guts."

Kidding aside, it's very hard, to get some stubborn people (especially family members) to understand, what our problem is. If they are willing to learn, I'd try to give them all information a can. Brochures, internet-adresses, message boards, maybe something, where they can read a doctors letter or so. If they are not willing to learn, I'd first try to convince them. But if they're really stubborn, I'd try to stick to the people in my family that DO understand. And if you don't have another possibility (like a family gathering or something), bring your own food and try to ignore them.

Hugs, Stef

Guest gfinnebraska
Guest gfinnebraska
Posted

Thanks ~ I just needed a "pep" talk. It is SO depressing to be the only "odd" one in the family ~ on both sides!! Well, odd with food anyway!! Heehee ;) It is just so frustrating when they offer me things they KNOW I can't have. Sigh... patience is a virtue ~ right? :) Thanks again for the words of encouragement.

stef-the-kicking-cuty Enthusiast
stef-the-kicking-cuty
Posted

Hey, that's what we're here for, right? But hehe, my uncle-in-law dave (nickname uncle frog :lol: ), he and I are good friends. He actually gave me the walk down the isle on my wedding day, because my dad couldn't fly over, because of his pressure problem with his ears. When we made little fires on some nice summer evenings in their backyard last year he always offered me beer, oreos and these marshmallow-thingies on cookies, I forgot, what they're called in english (we don't have them in germany and I actually don't like them anyway). And after we found out I have celiac I couldn't eat most of that stuff anymore. So each time he asked I grabbed my rucksack and held the gluten-free oreos under his nose. I said: 'See this? That's mine!' When he wanted to try one, i said: 'No, you have your own. If you eat mine, what do I eat then???' And so I avoided to give him one and him finding out, that they're probably not that good as his oreos in his own opinion. Good solution for everybody.

Hugs, Stef

celiac3270 Collaborator
celiac3270
Posted

I can sympathize with you--

People used to think it was all in my head as well--my mom couldn't understand why I would get sick so often--little did she know I had celiac and malrotation. The doctors thought it might be that I wanted attention....ugh...but at least people know it wasn't in my head now.

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      By knitty kitty · Posted

      @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
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      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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      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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