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7 Months And Feeling Bummed

peanjmiles

By peanjmiles
in Coping with Celiac Disease

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peanjmiles Newbie
peanjmiles
Posted

Hello Everyone!

This is my first posting here but I have been reading this forum for months. Well my brief history is that I was diagnosed in February of 2010 by both biopsy and blood work. I started a gluten free diet right away. In June 2010 I was diagnosed with Hashimoto and Polycystic Ovary . I had so many questions so I went to a nutritionist who was not much help and I think I actually new more about Celiac than her.

So now I feel a little bit better than I was but I am still not feeling completely normal. I get tired easy and have gained 15 pounds. I have trouble with what I can eat and cross contamination. My doctor said I was probably very sensitive because the blood work results were very high. I realized that I can

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i-geek Rookie
i-geek
Posted

In the USA, maltodextrin is normally made from corn and is safe unless otherwise specified. If it is from wheat, that HAS to be labeled according to federal law because wheat is one of the 8 major allergens.

"Natural flavorings" are another thing altogether. They may be perfectly safe, or they may include barley malt, which doesn't have to be specified on the label at all because barley isn't a Big 8 allergen. When in doubt, either contact the company directly or avoid the item.

elk Rookie
elk
Posted

Both maltodextrin and natural flavorings can be aliases for MSG, which can cause a bunch of problems. The best thing to do (IMHO) is to just stick with whole/real foods. I used to hate cooking, but I really enjoy it now. It takes a bit to get used to, but it's really just a matter of creating new habits.

As far as thyroid, it is really hard to get right and you could be having issues with that. What kind of medication are you taking? Have you tried Armour? Make sure your doctor is working closely with you on this and isn't getting tunnel vision with with what he's treating you for (celiacs AND hashi's AND...). I would also suggest having your cortisol levels checked to make sure your adrenal glands are functioning properly. A lot of people on thyroid meds break up thir doses throughout the day, especially if they're taking Armour, so that might be something to look into. Always get copies of your lab results so YOU can see what's going on.

As far as what to eat, you can make anything with whole foods: grassfed meats, eggs, legumes, rice, organic fruits and veggies, evo, coconut oil, butter (real butter made with cream & salt only), herbs, spices. If you buy anything processed, make sure the ingredients are actual food, i.e., Peanut Butter should only be peanuts and maybe salt, tomato paste should only be tomatoes, cheese should have minimal ingredients and not food coloring or "??" to "prevent caking", etc.

Wish I could offer insight on the celiacs, but I'm new to that. By eliminating processed foods, you pretty much get out of reading labels. :P

sb2178 Enthusiast
sb2178
Posted

rash... lupus? sorry to suggest it, but autoimmune diseases can cluster.

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    • Ginger38
      Challenges eating gluten before biopsy

      By Ginger38 · Posted

      I refused to do the gluten challenge for a long time because I knew how sick I would be: I have always had and still have positive antibodies and have so many symptoms my  GI was 💯 sure I would have a positive biopsy. I didn’t want to make myself sick to get a negative biopsy and be more confused by all this.  He couldn’t guarantee me a negative biopsy meant no celiac bc there may not be damage yet or it’s possible to miss biopsies where there’s damage but he was so sure and convinced me I needed that biopsy I went back on gluten. It was a terrible experience! I took pictures of the bloating and swelling and weight gain during the challenge. I gained 9 pounds, looked pregnant, was in pain , couldn’t work or function without long naps and the brain fog was debilitating. And in the end he didn’t get a positive biopsy… so I wish I had never wasted my time or health going through it. I haven’t been truly straightened  out since and I am currently battling a shingles infection at 43 and I can’t help but wonder if the stress I put my body under to try and get an official diagnosis has caused all this. Best of luck to you - whatever you decide. It’s not a fun thing to go through and I still don’t have the answers I was looking for 
    • Scott Adams
      Challenges eating gluten before biopsy

      By Scott Adams · Posted

      It's completely understandable to struggle with the gluten challenge, especially when it impacts your health and studies so significantly. Your experience of feeling dramatically better without gluten is a powerful clue, whether it points to celiac disease or non-celiac gluten sensitivity. It's very wise of you and your doctor to pause the challenge until your holidays, prioritizing your immediate well-being and exams. To answer your questions, yes, it is possible for blood tests to be negative initially and become positive later as the disease progresses, which is why the biopsy remains the gold standard. Many, many people find the gluten challenge incredibly difficult due to the return of debilitating symptoms, so you are certainly not alone in that struggle. Wishing you the best for your exams and for obtaining clearer answers when you're able to proceed.
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      Challenges eating gluten before biopsy

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