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Recently Diagnoised With celiac disease

Joe

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Joe Newbie
Joe
Posted

I have been on the" gluten free diet' for two weeks and signs of recovery has started. I saw a dietitian today and she was amazed at the knowledge I had in such a short time. Thanks to this website and several others I have visited I can now relate to others who are further down the road than I am.

I have tried making my own bread using the approved flower mixtures and lists of approved ingredients. It tastes awful and I" toasted it" to hide the taste. Am I doing something wrong or is this the best it gets?

What is the average time for the skin blisters and rashes I have to disapear quietly into the night! My scalp is a battlefield and I have been using a medicated shampoo for the last two weeks with no change. I need some help to locate the best product available to win then war and return my scalp to normal!!

I am brand new at this and hope my questions make some since and that I get some helpful advice soon!

This site has a lot to offer celiacs who need to learn what it takes to get healthy and stay that way! I am a 60 year old male who's body is not willing to give up the fight!! Go Irish!

jkelly2315

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teebs in WV Apprentice
teebs in WV
Posted

Hi Joe. Glad you are starting to feel better. There is a prescription - Dapsone - that has definitely helped me, as well as many others. However, there are side-effects and you need to have your bloodwork monitored while you are taking it. I have been taking it since October and my breakouts started clearing up after just a couple of days. This, in conjunction with a gluten-free diet should make you feel soooooooooo much better!

There are also other medications available, but I have not tried them. Without medication, it can take up to 6 months to completely clear (from what I have read, and I am by no means an expert). Others on here will chime in and give you some good advice.

As far as the bread goes, I haven't found any that I think are good. I tried another one this weekend - one that I have seen several people rave about - and I didn't like it. I would rather go without than eat that stuff! But, I hear that you do get used to it - I'm just not there yet.

Good luck to you - and welcome!

mamaw Community Regular
mamaw
Posted

Hello

Stick to it and as time goes on you will begin to feel better & better......

I love the bread mix from breads by anna. It's not towntalk white but an earthy bread. I make it in a bread maker....Also Glutino makes good bagels, Everybody Eats in Brooklyn has the most wonderful crusty rolls and baguettes in the world but pricey. I have to mailorder almost everything as thee is not much where I live in western Pa.....I use betty hagman four bean flour when making cookies and sweet breads with no changes to my old wheat recipes...

I have been researching by trial & error and have spent alot of money doing it but I now know where to buy the best food stuff at there....

Its a shame the US is so far behind other countries on this issue........ We have four of us eating gluten-free - 2 are under 7 yrs old so I try to keep their interest peaked with new goodies.

mamaw

lhasapets@zoominternet.net

nettiebeads Apprentice
nettiebeads
Posted

Be sure to check all of your toiletries for gluten. A lot of the lotions that promote soothing have oat in them. Quite a few have wheat, wheat germ or wheat starch. Did you get yourself a dedicated toaster? I now have one, a Christmas present from my MIL. And check ALL labels. Since the new labeling law went into effect I'm finding that lots of things I thought were safe are "made in a facility that also processes wheat" :angry::angry::angry:

Give yourself time. It takes awhile for the damage to occur, so likewise it takes time to heal. And since everyone's physiology is different, everyone has different healing rates. Just keep at it.

Annette

Joe Newbie
Joe
Posted
  • Author

Be sure to check all of your toiletries for gluten. A lot of the lotions that promote soothing have oat in them. Quite a few have wheat, wheat germ or wheat starch. Did you get yourself a dedicated toaster? I now have one, a Christmas present from my MIL. And check ALL labels. Since the new labeling law went into effect I'm finding that lots of things I thought were safe are "made in a facility that also processes wheat" :angry::angry::angry:

Give yourself time.

I want to thank you for your reply to my questions and concerns. Everyday is a new adventure for me as I wair for new dvelopments with this disease. I am dizzy, somewhat confused and my strength is not what it should be. I know in time with this medication I will eventually turn the corner but it's the wait time that is frustrating me.

I have open mind and willing to stay on the gluten free diet becuase once this disease is under control I do not want to go backwards! My family is suupporting me and will do whatever it takrs tom make me feel better about my condition.

I go for my third blood test tomorrow and hopefully I will be improving. My Dr. diagnoised the disease right away and got me started on the road to recovery. I have confidence in him but will get a second opinion and new testing next month just as a backup! If I am to be on this diet for life I want all test data to be confirmed by two different Drs. and labs. I will feel better knowing this!

Live long and prosper!

Joe

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    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen1Nc7EtAlJyJbU8EhB89ElCGFPRavEQkTFHv9V2Zh1EMAPRno7UajBpLCQ-1JfC5jKUyzfgsf7jN5L6yfZSgjhnwEbg6KKwWrKeghga8W_CAhEEw9N0.eDBrhYWsjgEFud6ZE03iun0-AEaGfNS1q4ILLjZz7Fs&dib_tag=se&keywords=buckwheat%2Bgroats&qid=1769980587&s=grocery&sprefix=buchwheat%2Bgroats%2Cgrocery%2C249&sr=1-4&th=1 Takes about 10 minutes to cook. Incidentally, I don't like quinoa either. Reminds me and smells to me like wet grass seed. When its not washed before cooking it makes me ill because of saponins in the seed coat. Yes, it can be difficult to get much dietary calcium without dairy. But in many cases, it's not the amount of calcium in the diet that is the problem but the poor uptake of it. And too much calcium supplementation can interfere with the absorption of vitamins and minerals in general because it raises gut pH.
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    • catnapt
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      By catnapt · Posted

      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      IBS-D vs Celiac

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