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Finally An Answer! I Have Celiac

Guest ShannonL

By Guest ShannonL
in Post Diagnosis, Recovery & Treatment of Celiac Disease

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Guest ShannonL
Guest ShannonL
Posted

OK just left the dr. I DO have celiac. I am beginning this journey AGAIN...I was dx 4 years ago then told I didnt have it. Now I do for sure. Anyway....here are the first of many questions. I dont have issues with my skin...should I still not use make-up that may contain gluten? What is a good book to start with? Is there a celiacs for dummy's???? LOL if so I need it.

Should I just go basic fruits and vegetables for 2 weeks and then add dairy and other somewhat processed stuff? Any advise would be appreciated. I am exhauseted and need some hand holding. I have a 11 mo who is IGg4 deficiant and she is sick ALL the time and I dont sleep! ARRRR I hoping this fod lifts. MY dh told me last week that I am going to be something when I am 60. Now maybe I will get my brain back.

Shannon

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aikiducky Apprentice
aikiducky
Posted

It's a good ideato start with simple foods. You could do vegetables, fruit, meat, fish, eggs, rice, for a couple weeks and then see how you feel. That way you don't have to spend so much time reading labels right away.

I hope you start to feel better soon. :)

Pauliina

gadgetgirl Newbie
gadgetgirl
Posted

Shannon,

There actually is a "Living Gluten-Free for Dummies" book available. It is worth reading - I found it combined information from a lot of sources into one book. It would be a good place to start.

So is the advice to just go with a basic diet for the first few weeks. In my case, I have intolerances that go beyond gluten and it was frustrating the first month or so to figure out everything that I was intolerant to. It would have been much simpler if I had started out very simple and then started adding back foods.

I hope you start feeling better soon.

Regina

SchnauzerMom Rookie
SchnauzerMom
Posted

I have the Gluten Free for Dummies book and it has helped me a lot. Tremendous amount to information in it. I learned about this website from that book.

happygirl Collaborator
happygirl
Posted

Check out the book listed in my signature. It is written by one of the top Celiac physician's and researchers and was just published this year. While much still is unknown about Celiac, it is a great resource for the information that is currently out there. I HIGHLY recommend it. you can get it from amazon or any other bookstore.

Feel free to ask any and all questions. Celiac is strange. Remember that Celiac is a genetic disorder...so your children could have it or could develop it. They suggest that ALL first degree relatives are tested via the full blood panel (Open Original Shared Link), including parents, siblings, and children. However, in children under two, the testing is somewhat unreliable at this point and often can miss Celiac.

Also, just because someone in your family is tested now, doesn't mean that they can't develop it later (like you developed it later...I "got" it in my early 20s).

The only "cure" for Celiac is a STRICT gluten free diet....it will take time to heal, so make sure you have patience. It took me months to feel somewhat normal, but I felt a difference within days. Celiac is often referred to as a medical chameleon because of its multitude of different symptoms, and course of the disease.

We are here to help! Best of luck!

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      Thank you all for your advice and the dermatitis herpetiformis article. The latter made me realise I had stopped taking my antihistamine, which I will restart today. The Dapsone has cleared the rash entirely but I still get quite a bit itching, absolutely nothing to see though. I know its notoriously hard to clear and its still relatively early days for me.  The iodine issue is very interesting. I do eat quite a bit of salt because I have Addison's disease and sodium retention is an issue. I also have autoimmune hypothyroidism, not sure how a low iodine diet would play into that? Because of my Addison's I am totally steroid dependent, I take steroids 4 x daily and cannot mount any defence against inflammation. I need to increase my meds for that. Now that I know what is wrong I can do just that if Im having a bad day. Life is very sweet, just so damn complicated sometimes! Hey ho, onwards. Thank you again for your advice.  
    • trents
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    • catnapt
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    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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