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Will Someone Tell Me What's "normal" Following Starting A Gluten-free Diet

Sarah-0608

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Sarah-0608 Newbie
Sarah-0608
Posted

Hi all...I'm Sarah and I was diagnosed via blood test (although the endoscopy was negative) 4 weeks ago. I was wondering what was a general idea of the recovery time, and what your symptoms were like, because I still feel nearly as sick as I did before starting the gluten-free diet and being only 18 I didn't think it should take that long to heal. Should I consider that this is not celiac? Or am I just messing this diet up? When am I going to be better??

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darlindeb25 Collaborator
darlindeb25
Posted

Sarah, going gluten free is just the beginning. Your body needs time to rid itself of the toxins, then it needs time to heal. You didn't get sick overnight, and you will not feel better overnight. 4 weeks really is not a long time, for some, it takes 2 yrs to heal, some, like me do not heal totally, but i was sick for more yrs that you are old, before finding out about celiac disease.

Keep eating gluten free, and soon you will feel better each day. Are you watching all vitamins for gluten, any meds...gluten hides in so many places???

Treen Bean Apprentice
Treen Bean
Posted

It took me about a year and a half to heal. Just be patient with your body. It will there.

God Bless,

Treen Bean

ravenwoodglass Mentor
ravenwoodglass
Posted

It takes time. Be sure to check all your toiletries, makeup, lotions etc and also if you have a significant other a kiss after they eat or drink gluten is off limits until they have throughly brushed their teeth. Also try to eat as simply as you can right now. Fresh whole foods rather than processed and if you live in a gluten home make sure that you and your family or roommates become real familiar with all the precautions we need to take. Hang in there and post any questions you need to or vent if you get frustrated. We have all been there.

Green Eyes Rookie
Green Eyes
Posted

Hi Sarah,

Just thought I would chime in!!! I'm kinda at a disadvantage in giving information on how to heal. I wasn't sick before diagnosis, and feel good after diagnosis. Although it has certain advantages, sometimes I don't know when I've done something wrong. It takes a good amount of gluten for me to even have a reaction.

Having said that. Pay attention to what your body is telling you. I take every mistake (glutening) as a learning experience.

Do you have the "unsafe ingredients" list? That helped me more than anything. Be sure what you are eating is gluten free. Being 18 with celiac is difficult. Hang in there it does get better.

Jennifer

mftnchn Explorer
mftnchn
Posted

Also, you might experiment with dairy free. The damage to the intestinal villi impacts production of carb digestion enzymes, in particular lactase. So milk is often a problem initially. From there, if you don't improve, you might consider other carbs (check out the SCD for an approach to that), other food intolerances because many of us are prone to them. Be aware that soy has also been shown to cause villi damage in some people, so that is often another one that is problematic. Food intolerances are common among us because the damage to the intestine leads to leaky gut and proteins getting into the bloodstream where antibodies form. It may or may not settle down in the future.

Hang in there and keep posting...there is lots of help available here.

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    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
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      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
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      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
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      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
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      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
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