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Where To Start?

meeko

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meeko Newbie
meeko
Posted

Hello,

I want to let you all know how helpful this forum is. I was just diagnosed this week with celiac after years of being told nothing was really wrong and that things would just go away. My symptoms have been persistent but fairly mild compared to my sister who was diagnosed a month ago (the reason I was finally tested), but unpleasant and I am glad to finally have an answer. I am feeling a bit nervous about where to start, however. I have been on some sites to gather information about what is safe to eat and not, but how trustworthy is most of this? I also have been on some customer service sites for Astro Yogurt who says their Jeunesse yogurt is gluten free and Dairy Queen has some gluten free products. Are these sites trusworthy? How do I go about contacting companies to find out if their flavourings might have been in contact with gluten? I am going gluten free on Sat and I want to make sure that I get it out of everything. Any advice on how best to start this challenging, but exciting to start feeling better, experience?

Thanks again, all of the postings on here have been very helpful!

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queenofhearts Explorer
queenofhearts
Posted

Welcome! THIS is the place to start! So much useful info AND moral support.

Nini's Newbie Kit is great, too-- you can get it on her site, Open Original Shared Link

Ask any question & somebody here is bound to know the answer.

Nice to have you with us!

Leah

Guest cassidy
Guest cassidy
Posted

I usually trust what I find from company websites. I go to the company itself and a lot of them will have the info on the website. If not, I email them. I ask if the product is produced in the same facility as gluten.

Also, if you search on this forum for whatever product you are looking for, you may find out that someone has posted about it. I would say 99% of the info on here is accurate. If someone does post something inaccurate, someone else usually posts right away and corrects the mistake.

I don't know if that survival kit has a list of companies that always list gluten, but that is very helpful to carry with you. I also keep a list of all the words that could indicate gluten.

meeko Newbie
meeko
Posted
  • Author

Thank you very much for the advice. I am going on my first gluten free shopping trip today and I am feeling a little daunted, but with all the advice on here I think I will be alright!

beaglemania Rookie
beaglemania
Posted

Good luck with your shopping. If you need any help on finding good brand names of food, just send me a personal message or email me, horsegal1139@bellsouth.net. I'm a picky eater and have to have foods that taste good.

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  • Posts

    • cristiana
      Ibuprofen

      By cristiana · Posted

      Ferritin levels.  And see what your hemoglobin looks like too, that will tell you if you are anemic?  You can have 'low normal' levels that will not be flagged by blood tests.  I had 'low normal' levels, my lab reading was. c12, just over what was considered normal, but I had small benign lesion on my tongue, and sometimes a sore mouth, and a consultant maxillofacial ordered an iron infusion for me as he felt my levels were too low and if he  raised them to 40, it would help.   Because you are not feeling 100% it might be worth looking at your levels, then discussing with your doctor if they are low normal.  But I stress, don't supplement iron without your levels being monitored, too much is dangerous.
    • Mari
      New here

      By Mari · Posted

      Hi Katht -  I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal  function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was very true for me. I am still elimination foods from my diet. One person suggested you keep a food diary and that is a good idea but it is probably best just to do an elimination diet. There are several ne and maybe one for celiacs. I used one for a while and started with plain rice and zucchini and then added back other foods to see if I reacted or not. That helped a great deal but what I did not realise that it would only very small amounts of some foods to cause inflammation in my intestine. Within the last few years I have stopped eating any trace amounts of hot peppers, corn and soy(mostly in supplements) and nuts, (the corn in Tylenol was giving me stomach aches and the nuts were causing foot pains). Starting an elimination diet with white rice is better than brown rice that has some natural toxins. In addition it is very important to drink sufficient plain water. You can find out how much to drink for your height and weight online. I do have difficulty drinking 48 ounces of water but just recently have found an electrolyte supplement that helps me stay well hydrated, Adding the water and electrolytes may reduce muscle cramps and gag spams you wrote about. . Also buy some anti-gluten enzyme capsules to take with meals. I use GliadinX advertised here. These are a lot of things to do at one time as they reflect my 20 years of experience. I hope you do what you can manage to do over time. Good luck and take care.
    • Colleen H
      Ibuprofen

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      Yes thyroid was tested.. negative  Iron ...I'm. Not sure ... Would that fall under red blood count?  If so I was ok  Thank you for the detailed response..☺️
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    • cristiana
      Ibuprofen

      By cristiana · Posted

      Hi Colleen Are you supplementing B12/having injections? I have learned recently that sometimes when you start addressing a B12 deficiency, it can temporarily make your symptoms worse.  But it is important not to stop the treatment.  Regarding your problems with anxiety, again that is another symptom of a B12 deficiency.   I didn't know what anxiety was until it hit me like a train several months before gastrointestinal issues began, so I can certainly relate.   Two books which helped me hugely were At Last A Life by Paul David (there is a website you can look up) and The Depression Cure: The Six-Step Programme to Beat Depression Without Drugs by Dr Steve Llardi.  Although his book is aimed at people who have depression, following the principals he sets out was so helpful in lessening my anxiety.  Llardi suggests we need to focus on getting enough: - physical exercise - omega-3 fatty acids - natural sunlight exposure - restorative sleep - social connectedness - meaningful, engaging activity   ... and we should feel a lot better. That is not to stay you must stop taking medication for depression or anxiety if you have been prescribed it, but adopting the changes Dr Llardi sets out in the book should really help. Can I just ask two more questions:  1) you say that you are B12 deficient, did they test your iron levels too?  If not, you really ought to be checked for deficiency and, 2) did they check your thyroid function, as an overactive thyroid can be cause rapid heartbeat and a lot of coeliacs have thyroid issues? Cristiana        
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