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Willowmeadow

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Willowmeadow Newbie
Willowmeadow
Posted

Feeling quite low and unasure at present as do not know where to begin or what to eat. I have only just had my blood tests and it be 2 weeks before I get the results but all of what I have read on here is like seeing myself which makes me even more sure I have it. Since childhood I have had problems and since my teens a bloated tummy so when I stop to think how long I must have had this and no one was aware it makes me so mad. Any advice on where I go from here and how I cope be much appreciated.

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WinterSong Community Regular
WinterSong
Posted

Hi and welcome! Be sure to poke around and read threads. The search engine is great, and everyone is always more than happy to help answer questions that you might have.

In the case that your blood tests are positive, did your doctor say that he'll want to do a biopsy? If he does, you'll need to keep eating gluten until then (which will give you time to wrap your head around things and prepare). Some doctors will diagnose via blood test alone. If that's the case, you can start the diet right away. And even if it's negative (which you could have a false negative reading or be gluten intolerant), you should try the diet anyway and see if it helps. Couldn't hurt to try! :)

There's also a thread on here titled something like Your Top Two Pieces of Advice that you might want to do a search for.

Again, welcome to our community!

Willowmeadow Newbie
Willowmeadow
Posted
  • Author

He took bloods and never told me anything else about it apart from stop eating gluten straight away. Am lost by it all to be honest and do not understand much about it yet.

Thank you for your welcome and reply.

Harpgirl Explorer
Harpgirl
Posted

Hi, I'm new here too (well relatively speaking :) ) I won't get my blood test back until 7/7. I went gluten free as soon as my blood was drawn. I found that the best way to cope with it is to educate yourself. This site is a great place to start. Ask questions, get opinions, etc. I'm also reading Living Gluten-Free for Dummies by Danna Korn. It's plain, non-technical jargon helps me to understand why my body reacts to gluten (whether I truly have celiac or not).

Welcome and best wishes to you! :D

cahill Collaborator
cahill
Posted

Hi :D Welcome to the forums.

notme Experienced
notme
Posted

hello and welcome :) if your doctors are anything like mine, they don't know half as much as the people on this board do. my gp knew what celiac is but his nurse practitioner is clueless. my gi is good, but when i mentioned skipping dairy and soy for awhile, she told me i didn't need to go nuts with the diet. well. i *do* have to go nuts with it if i want to heal and feel well!!! poke around this forum because they can usually give you ideas if things are perplexing you - i am still tweaking my diet and figuring out what is messing up my body and i am almost a year gluten free. lol - yesterday i gave up fresh peaches just because i am not digesting them very well even though they are naturally gluten free. although i may be able to eat canned peaches. experiment, experiment..... the only thing i don't test out on myself is gluten.

start out eating plain foods. skip the dairy for awhile because the stuff that you need to digest lactose is produced by your villi and until your poor little villis heal, dairy will not be digested and it'll slow your healing. replace any porous cooking equipment: wooden spoons, plastic containers, cutting boards. check your toiletries: soaps, shampoos, etc anything that you use from the neck up :) and watch out when kissing your s.o,! good bread is udi's if you can get it. good pasta is tinkyada..... check all your ingredients/read the labels every single time!! even if you buy the same exact brand... there is a safe/unsafe list on this site... ummmm..... others will have very useful advice. we all know how you feel and this site is a gift from God. don't hesitate to post specific questions. we are all beyond embarrassment lol - i was lost until i found all these great people who knew exactly what i was going through! nobody else really does haha not even most doctors.

kellynolan82 Explorer
kellynolan82
Posted

Welcome! And I hope that you too can gain what I have from this board :)

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    • klmgarland
      Help I’m cross contaminating myself,

      By klmgarland · Posted

      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
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      Help I’m cross contaminating myself,

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      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
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