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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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    • akebog
      Fusilli Pizzeria, Miller Place, NY

      By akebog · Posted

      Very good pizzeria with small dining room in back of the restaurant. The owner's daughter has celiac & they have gluten free pizza & a gluten free menu. Some items from the regular menu can be made gluten free also. They have a lunch menu which we ordered from & my chicken with spinach & mozzarella over gluten-free penne was delicious. They also have Tuesday night pasta specials & Thursday night chicken pasta specials. We plan on going back for dinner soon.
    • nancydrewandtheceliacclue
      Celiac flare years after diagnosis

      By nancydrewandtheceliacclue · Posted

      @Aretaeus Cappadocia and @Russ H thank you both for your helpful advice and information. I haven't seen a GI in years. They never helped me aside from my inital diagnosis. All other help has come from my own research, which is why I came here. I will be even more careful in the future. 
    • Aretaeus Cappadocia
      Celiac flare years after diagnosis

      By Aretaeus Cappadocia · Posted

      @nancydrewandtheceliacclue, you are welcome. After looking at this thread again, I would like to suggest that some of the other comments from @Russ H are worth following up on. The bird-bread may or may not be contributing to what you are experiencing, but it seems unlikely to be the whole story. If you have access to decent healthcare, I would write down your experiences and questions in outline form and bring this to your Dr. I suggest writing it down so you don't get distracted from telling the Dr everything you want to say while you have their attention.
    • Aretaeus Cappadocia
      Celiac flare years after diagnosis

      By Aretaeus Cappadocia · Posted

      @Russ H, I partly agree and partly disagree with you. After looking at it again, I would say that the slick graphic I posted overestimates the risk. Your math is solid, although I find estimates of gluten in white bread at 10-12% rather than the 8% you use. Somewhat contradicting what I wrote before, I agree with you that it would be difficult to ingest 10 mg from flinging bread.  However, I would still suggest that @nancydrewandtheceliacclue take precautions against exposure in this activity. I'm not an expert, I could easily be wrong, but if someone is experiencing symptoms and has a known exposure route, it's possible that they are susceptible to less than 10 mg / day, or it is possible that there is/are other undetected sources of exposure that together with this one are causing problems. At any rate, I would want to eliminate any exposure until symptoms are under control before I started testing the safety of potentially risky activities. Here is another representation of what 10 mg of bread would look like. https://www.glutenfreewatchdog.org/news/wp-content/uploads/2019/10/10mgGlutenCrumbsJules.jpg Full article that image came from: https://www.glutenfreewatchdog.org/news/what-does-10-mg-of-gluten-look-like/
    • nancydrewandtheceliacclue
      Celiac flare years after diagnosis

      By nancydrewandtheceliacclue · Posted

      @Aretaeus Cappadocia thank you for your reply and the link, that is very helpful to get a visual of just how small of an amount can cause a reaction. I know I am not consuming gluten or coming into contact with gluten from any other source. I will stop touching/tossing bread outside! My diet has not changed, and I do not have reactions to the things I am currently eating, which are few in number. My auto immune reaction just seems so severe. The abdominal pain is extreme. It takes a lot out of me. I guess I will be this way for the rest of my life if I ever happen to come into contact with gluten? I appreciate the help. 
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