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Newbie Posting Story And Wanting Advice


Taliesyn

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Taliesyn Newbie

Hi,

I am not sure if this is the right place?

I want to post my info and possibly get some feedback as I start on my journey.

About 10 yrs ago I started with symptoms that GP's were thinking were related to thyroid and then bloods were showing negative. I spent a long time with many symptoms including having a hysterectomy for fibroids (7 yrs) and weight gain, hair thinning,fatigue, cold intolerance/itchy skin/tinnitus type noises/low mood/mild anxiety/tearfulness/recurrent puffy face and eyes/bloating/some constipation - and so on.

I ended up joining a forum and finally having battled the system and seen a private doctor (who said I had an autoimmune thyroid condition) and now self treat - my health started to improve - since 2 yrs ago.

Recently I have started to crave food/always feel hungry and always being a chocoholic that has featured big time. I always eat healthy and have not really been into processed foods sticking with cooking fresh. I am always tempted to eat a lot of cakes/biscuits at work on special occasions or at home if it is there.

I have been comfort eating also due to some work stress.

My symptoms - I feel tired and not wanting to exercise/bloated/put on weight - 10lbs in about 4 months - fatty stools as described as a symptom of gluten intolerance which are really smelly (sorry). I have another cold and sometimes have achy bones/joints. I have had some sinus discomfort and headaches.

I am taking T3/Liothyronine and was taking B12 and Selenium ( I ran out and stopped taking the vitamins so regularly)

So - I am wondering whether I may be gluten intolerant and not having much faith in the NHS General Practitioners - I would like to explore this myself.

I do not have diabetes or any other conditions - I am female and 49 yrs old.

When Christmas is out of the way - I plan to address gluten and see.

Any thoughts would be very welcome.

Many thanks


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Takala Enthusiast

Try to ease yourself into eating more healthy fats, such as olive oil, coconut milk, avocado, nuts, because they sate hunger better than carbohydrates. Also, cravings for minerals and vitamins may show up in your body as sugar cravings, because "hunger" is not that specific, more of a generic sensation. Eating carbs in the form of high glycemic index ones ("white, fast acting") and sugar will spike your blood sugar, then it crashes, then it feeds another craving. So going back to the vitamin B mixture (gluten free) and adding in some calcium and magnesium and D may help with that, also.

Celiac Mindwarp Community Regular

If you are in the UK you may want to go to your GP and ask for celiac blood tests and to be referred for a biopsy. You need to still be eating gluten for the tests to be accurate. Many areas still have access to gluten-free food on prescription if you have an offial diagnosis.

Many people here are self diagnosed, mainly through response to a gluten-free diet and how bad they get eating gluten, and their history.

Whichever route you decide come and ask lots of questions and get support. It can be overwhelming at first, but plenty of the folks here have great advice

GFinDC Veteran

Yep, get tested for celiac disease first, then try the gluten-free diet. The initial testing is just a blood draw to check for antibodies to gliaden, the protein in wheat that causes the auto-immune reaction in celiac disease. There are IgA and IgG antibodies tests, and ttg and Deamidated gliaden also, plus total IgA. Test results can take a couple weeks to get. If initial blood tests are positive, the docs usually want to do an endoscopy to check for villi damage in the small intestine, taking 5 to 8 biopsy samples. There are some newly identified forms of gluten intolerance that can't be detected with the current test methods though. So it is good to try the diet after the celiac disease testing regardless of results. That way if you have a non-testable condition, you may still discover it by dietary changes that results in symptoms improvement.

It is much harder to be tested after doing the gluten-free diet, and can be more painful also. After being off gluten a while the antibodies decrease, and to get antibodies back up to a testable level, the person needs to start eating gluten again for a while. Since symptoms are often more painful and unpleasant for people after stopping gluten and then getting re-exposed (glutened) it can be hard to endure a gluten challenge.

FAQ Celiac com

http://www.celiac.co...celiac-disease/

Newbie Info 101

http://www.celiac.co...ewbie-info-101/

Non-celiac wheat sensitivity article

http://www.celiac.co...ists/Page1.html

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    • SusanJ
      Two months ago, I started taking Dupixent for dermatitis herpetiformis and it has completely cleared it up. I can't believe it! I have had a terrible painful, intensely itchy rash for over a year despite going fully gluten-free. See if your doctor will prescribe Dupixent. It can be expensive but I am getting it free. When the dermatitis herpetiformis was bad I could not do anything. I just lay in bed covered in ice packs to ease the pain/itching and using way too Clobetasol. Dapsone is also very good for dermatitis herpetiformis (and it is generic). It helped me and the results were immediate but it gave me severe anemia so the Dupixent is better for me. Not sure if it works for everyone. I cannot help with the cause of your stress but from experience I am sure the severe stress is making the celiac and dermatitis herpetiformis worse. Very difficult for you with having children to care for and you being so sick. Would this man be willing to see a family therapist with you? He may be angry at you or imagine that your illness is a psychosomatic excuse not to take care of him. A therapist might help even if he won't go with you. Also do you have any family that you could move in with (with the kids) for a short time to get away? A break may be good for you both.
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      @tiffanygosci, Thiamine deficiency is a thing in pregnancy for "normal" people, so it's exponentially more important for those with celiac disease and malabsorption issues. I studied nutrition before earning a degree in Microbiology because I was curious what the vitamins were doing inside the body.  See my blog.  Click on my name to go to my page, scroll to drop down menu "activities" and select blog.   So glad you're motivated to see the dietician!  We're always happy to help with questions.  Keep us posted on your progress! 
    • tiffanygosci
      Thank you for sharing all of this, Knitty Kitty! I did just want someone to share some commonality with. I did not know This one Deficiency was a thing and that it's common for Celiac Disease. It makes sense since this is a disorder that causes malabsorption. I will have to keep this in mind for my next appointments. You also just spurred me on to make that Dietician appointment. There's a lot of information online but I do need to see a professional. There is too much to juggle on my own with this condition.<3
    • RMJ
      I think your initial idea, eat gluten and be tested, was excellent. Now you have fear of that testing, but isn’t there also a fear each time you eat gluten that you’re injuring your body? Possibly affecting future fertility, bone health and more? Wouldn’t it be better to know for sure one way or the other? If you test negative, then you celebrate and get tested occasionally to make sure the tests don’t turn positive again. If you test positive, of course the recommendation from me and others is to stop gluten entirely.  But if you’re unable to convince yourself to do that, could a positive test at least convince you to minimize your gluten consumption?  Immune reactions are generally what is called dose response, the bigger the dose, the bigger the response (in this case, damage to your intestines and body). So while I am NOT saying you should eat any gluten with a positive test, the less the better.  
    • knitty kitty
      @Riley., Welcome to the forum, but don't do it!  Don't continue to eat gluten!  The health problems that will come if you continue to eat gluten are not worth it.  Problems may not show up for years, but the constant inflammation and nutritional losses will manifest eventually.  There's many of us oldsters on the forum who wish they'd been diagnosed as early.    Fertility problems, gallbladder removal, diabetes, osteoporosis and mental health challenges are future health issues you are toying with.   To dispel fear, learn more about what you are afraid of.  Be proactive.  Start or join a Celiac group in your area.  Learn about vitamins and nutrition.   Has your mother been checked for Celiac?  It's inherited.  She may be influencing you to eat gluten as a denial of her own symptoms.  Don't let friends and family sway you away from the gluten-free diet.  You know your path.  Stick to it.  Be brave. 
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