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Celiac disease diagnosis

Lochella

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Lochella Newbie
Lochella
Posted

I recently got diagnosed with Celiac disease I must of had it my whole life, in 35 I've always had severe stomach problems in and out of hospitals and misdiagnosed until now. My small intestine is severely damaged in now waiting to see a dietitian and my specialist wants to see me again in 2 weeks. How do some of you deal with the pain of the healing process and what helps you? I'm in so much pain?

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Jmg Mentor
Jmg
Posted

Welcome Lochella :)

Hopefully you can draw some comfort from finally having an answer and thus starting the path to good health. Healing is going to come from your own body as you progress on the gluten free diet and it stops fighting itself and starts repairing that damage. You're still in the very early days and it's not an instant process sadly. 6 months is the usual figure bandied around for seeing significant improvement, although hopefully you'll get some signs of improvement much quicker than that.

The single best thing you can do is to eat good simple whole foods and make sure absolutely no gluten gets into your diet. There's some tips here: 

With stomach pains peppermint tea is my go to drink. Avoiding caffeine seems to help as well as its rough on digestion at the best of times. This may be a time to ease up on alcohol as well and consider dropping dairy, many find they're lactose intolerant but this can correct itself in time. 

You will find lots of good info, advice and support here, I hope the community is of help to you as it was to me. 

Best of luck!

M-SMOOTH Explorer
M-SMOOTH
Posted

I feel your pain ? Just diagnosed last week myself 34yrs old and the pain has me in bed most of the day.. would love to here what has helped a lot of u.. Hope u feel better

Jmg Mentor
Jmg
Posted
6 minutes ago, M_SMOOTH said:

I feel your pain ? Just diagnosed last week myself 34yrs old and the pain has me in bed most of the day.. would love to here what has helped a lot of u.. Hope u feel better

Welcome too! :)

Sorry to hear you're suffering now. If you can nail the diet you should improve. You should also think about vitamin supplements. There's a good chance that you're suffering from one or more deficiencies as a result of the affects of celiac on your intestine's capacity to draw nutrients from your food. A good multi vitamin is a must, just make sure its gluten free and see if your doctor can refer you to a dietician as Lochella's has.

Ennis-TX Grand Master
Ennis-TX
Posted

Going to suggest a whole foods only diet, no process foods or dairy for now til you start healing, Many of us suffer from deficiency issues as mentioned before, common ones are Magnesium, B vitamins, Iron, Vitamin D vitamin d E, folate, the list goes on. I really do suggest starting with magnesium in the form of Doctors Best or Nature Vitality Calm, the doctors best is easier on the stomach while the calm seems to be more effective if you can deal with it (magnesium Citrate is harsh on the stomach and can cause D)  I also suggest a blended supplement for b-vitamins like Liquid health Stress and Energy and the Neurological Support from the same company, 1 tbsp each 2-3 times a day works wonders for energy.   You might have to look into additional supplements you might be low in and for this I suggest talking to a dietician and getting tested to see about your levels.

As for pain and suffering normally you get over the withdrawal and healing starts after 2-6 weeks on a strict gluten-free diet that means no contamination or cheating. I suggest replacing most cooking appliances, cleaning everything, using freezer paper for a prep surfaces, new pans, cooking utensils, and use new liners/organizers in your drawers. Power scrub your oven and run on a cleaning cycle, same with fridge/freezer.  Got to get rid of every crumb and residue there is. I suggest tossing any baking dishes with scratches, cookie sheets, roasting pans and getting new ones. Lining things with foil when cooking helps, New toasters is a must.

When I started out I did so with just a toaster oven, microwave, and combo rice cooker/steamer/crock pot. Did roasted veggies, steamed dishes, stews, and got a bunch of microwave cooking ware like omelette makers, etc so I could cook safe gluten-free meals for myself.  Later I slowly got new pots, pans baking supplies, utensils etc.

M-SMOOTH Explorer
M-SMOOTH
Posted

Well I took test for deficiencies today won't get the results till Tuesday then I can go from there.. road to recovery 

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    • Rogol72
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By Rogol72 · Posted

      @HAUS, I was at an event in the UK a few years back. I remember ringing the restaurant ahead to inquire about the gluten free options. All I wanted was a few gluten free sandwiches, which they provided and they were delicious. The gluten-free bread they used was Warbutons white bread and I remember mentioning it on this site before. No harm in trying it once. It's fortified with Calcium and Iron. https://www.warburtonsglutenfree.com/warbs_products/white-loaf/ The only other gluten-free bread that I've come across that is fortified is Schar with Iodized salt, nothing else.
    • Scott Adams
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By Scott Adams · Posted

      In the U.S., most regular wheat breads are required to be enriched with certain B-vitamins and iron, but gluten-free breads are not required to be. Since many gluten-free products are not enriched, we usually encourage people with celiac disease to consider a multivitamin.  In the early 1900s, refined white flour replaced whole grains, and people began developing serious vitamin-deficiency diseases: Beriberi → caused by a lack of thiamin (vitamin B1) Pellagra → caused by a lack of niacin (vitamin B3) Anemia → linked to low iron and lack of folate By the 1930s–40s, these problems were common in the U.S., especially in poorer regions. Public-health officials responded by requiring wheat flour and the breads made from it to be “enriched” with thiamin, riboflavin, niacin, and iron. Folic acid was added later (1998) to prevent neural-tube birth defects. Why gluten-free bread isn’t required to be enriched? The U.S. enrichment standards were written specifically for wheat flour. Gluten-free breads use rice, tapioca, corn, sorghum, etc.—so they fall outside that rule—but they probably should be for the same reason wheat products are.
    • Scott Adams
      Inconclusive results

      By Scott Adams · Posted

      Keep in mind that there are drawbacks to a formal diagnosis, for example more expensive life and private health insurance, as well as possibly needing to disclose it on job applications. Normally I am in favor of the formal diagnosis process, but if you've already figured out that you can't tolerate gluten and will likely stay gluten-free anyway, I wanted to at least mention the possible negative sides of having a formal diagnosis. While I understand wanting a formal diagnosis, it sounds like she will likely remain gluten-free either way, even if she should test negative for celiac disease (Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If her symptoms go away on a gluten-free diet, it would likely signal NCGS).        
    • JoJo0611
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      By JoJo0611 · Posted

      Thank you. 
    • deanna1ynne
      Inconclusive results

      By deanna1ynne · Posted

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