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Are Your Symptoms Gone?

goodnews

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goodnews Apprentice
goodnews
Posted

So I am still in the testing stages of celiac....but I am so hopeful that after going gluten free I will finally feel better. But now I am wondering if those of you who are gluten free feel a little better, or if you feel like you used to feel pre-symptoms? I would LOVE to feel like my old self that existed not that long ago. I would love to have more energy, not have constant stomach pain, not feel like I am all hazy in a cloud with my thoughts, and all the other little things here and there. I don't want to get my hopes up too much...

So after going gluten-free are you healed or just feeling a little better?? And how long did it take to feel better too? TIA for taking time to answer.

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hnybny91 Rookie
hnybny91
Posted

I would say that after eliminating gluten from my diet I feel about 80% better but that is HUGE because I honestly felt like I was dying. I want to feel 100% and I knew that there must be other food intollerances so I had a food panel done. Out of 154 foods I tested sensitive to 36 and reacted to 50 more. I say that if you don't feel 100% to consider other food intollerances as well. I just got the results of my food panel back yesterday so I hope within another month I will be golden :) Oh, and I have been gluten free for almost three months and gluten, wheat, barley and oats did pop up on my panel so I know my self diagnosis was accurate :)

ravenwoodglass Mentor
ravenwoodglass
Posted

I would have to say I am at 98% after being strictly gluten free since 2002. My horrible digestive issues went away fairly quickly but other stuff like my arthritis, nerve and brain issues took a little bit longer to resolve.

adab8ca Enthusiast
adab8ca
Posted

ravenwoodglass,

YOU give us all hope with your story!!!!

keithceliac2010 Rookie
keithceliac2010
Posted

I suffered with celiac for at least 30 years remembering symptoms as far back as early teens. I was diagnosed by my wife and have been gluten free for 4 weeks. My symptoms were many: chronic fatigue, irratable bowel synd., depression, neuropathy in feet, restless leg syndrome, shooting pains in body, crippling pains in knees and hips, etc. etc. Classic text book celiac. This may be hard to believe, but within 24 hours of going gluten free i was getting relief from ALL of my symptoms vanished miraculously!!!! And they have not come back!!! No need to get tested here-the proof is in the pudding so to speak...

My wife on the other hand, started gluten-free diet a week before i did(she correctly diagnosed both of us). Her symptoms also disappeared within 24-48 hours and she felt wonderful for the first 3 weeks. However, she then has had a relapse of some of her symptoms: chronic fatigue, severe headaches, and the last 2 weeks have been diifficult for her ven though we both remain gluten free. She is now examining her diet to see what other sensitivities to foods and or medications she may be reacting too.

So, as it appears, different people can react differently when they go Gluten-free. Good luck to you. Keep in mind though that test for Celiac can show a false negative. So even if you get a negative on your test, your symptoms could still improve with a gluten-free diet.

eatmeat4good Enthusiast
eatmeat4good
Posted

I was mentally and physcially debilitated for 7 years. For almost 5 years I was hardly ever out of bed except to visit the bathroom. (or the Dr. :ph34r: ) Headaches, fatigue, nausea, depression, anxiety, weight gain without hardly eating anyting except soda crackers for nausea. (yeah, I know :ph34r: )

The first week of gluten free I had so much improvement in all these areas that I knew this was it. By three months I thought I was all healed and wouldn't get any better. But here I am at 6 months and continuing to get better every day. Especially mentally.

I am absolutely amazed at the resolution of symptoms and the return of my energy, body, muscles, and mental ability. I am thrilled. I never thought I would be able to work or function again, but indeed here I am, no headaches, no pain, no fog, and rebuilding my life.

Yes it can happen to you! And I hope it does!

goodnews Apprentice
goodnews
Posted
  • Author

So glad to hear these encouraging stories. I can't wait to go gluten free, and just hopeful to get some relief. I can't remember what it feels like to not have my stomach hurt. Some days it is better than others, but it is constant all the time! I said to my husband the other day "is it normal to always be aware of your stomach and to to feel sick?" I was starting to wonder if maybe everyone felt like that. It's just been so long! But whether or not I show up positive with the gene test or subsequent endoscopy, I will still try the gluten free diet for a while. It can't hurt and could possibly make everything better. I am just so tired all the time lately, I have never been like this. Thanks again, I have heard some stories where people felt a little better....but not practically healed. That was what I was hoping for :)

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zus888 Contributor
zus888
Posted

I'm guessing everyone is different. It seems the gut issues resolve more quickly than the neuro issues, fatigue, and brain fog. I've only been on the diet for 2.5 weeks and I don't notice any difference whatsoever. HOWEVER, I didn't have any real symptoms to begin with. My primary complaint has been, and still is, fatigue.

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    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
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      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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