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Jodi Mills

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Jodi Mills Apprentice

Hello My name is Jodi, I have been living with Celiac since I was well a toddler would be my guess. I was diagnosed at age 6, (dont know what tests were available, or if any testing was done). My mom put me on the gluten free diet and I improved. When I hit about 12 I started eating anything again, I was tired of being different, and didnt really understand the consequences. I got used to the bloating, rashes, naseau, I am now 23 and have been gluten free for about 3 months. I still have bloating, and other things, but not nearly as bad. I am new to this site, and looking for information on what and what not to do, eat, all that good stuff.

I did learn the hard way about shampoos though. So i have found a brand that works. I was using tresemee and clumps of hair were coming out.(I had bald spots) Now I am on sunsilk, and the spots are growing back. Talk about embarassing, I am 23 and and was losing my hair. :( Good thing my boyfriend knows my situation. :D

Now that everything is getting back on track, I am just wondering how long does it take for the healing to take place, I know it could take a long time, but is there anything I can do to help it along? I am also not seeing any doctors, I do not have insurance, and cannot really afford to rack up any more doctor bills.

Any and All advice would be greatly appreciated.


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happygirl Collaborator

Jodi, Welcome you to the board. I hope you make yourself at home!

Jodi Mills Apprentice
Jodi, Welcome you to the board. I hope you make yourself at home!

Thank You, I am definately trying to. This site amazes me!

Ursa Major Collaborator

Hi Jodi, and welcome here. One piece of advice is, to eliminate all dairy and soy for at least three to six months, to allow your insides to heal. The dairy especially could be causing the continuing bloating.

Many people here can't tolerate dairy even after several months, but others are able to reintroduce it eventually. You'll have to figure it out for yourself.

Have you replaced contaminated things in the kitchen? You need a new toaster for just gluten-free bread, a new colander if your old one is out of plastic (you absolutely cannot get all the gluten out of a plastic colander that you have drained gluten pasta with), wooden cutting boards and cooking spoons need replacing, as well as any scratched non-stick cookware.

Also, toss dish brushes and sponges (if you haven't done that already) and buy new ones.

Make sure your vitamins are gluten-free as well. A lot of the time vitamin E is derived from wheat germ oil, and some vitamins will have wheat starch as a filler (and so will medications).

Some people find that taking a probiotic or enzymes will help them heal faster.

missy'smom Collaborator

Welcome. :) This board is a great resource.

Jodi Mills Apprentice

Thank You Thank You!!!

For the most part, I am dairy free, but I guess I will work hard on cutting out the cheese. if it wasnt for cheese i would be dairy free. thank you for the good advice, I am going to give this a try. Ohh and i dont use the toaster, bread is too expensive and I dont have a bread machine. For the most part everything has been replaced, well i got new, and he uses the old stuff. and we keep them in seperate areas. I do my dishes and he does his. He does understand the importance of all this "nonesense" as some people have told me. He is Lactose intolerant, so he has some insight on how it makes me feel, he just doesnt have the long term effects like me. And He does really good about eating gluten free dinners. I think if it werent for him,(my BF sean) I would be having a much harder time with all of this...

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    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
    • Seaperky
      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease.  Thier gluten free options are awesome.
    • Churley
      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
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