Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Should I Give Up?

zebaldwin

Recommended Posts

zebaldwin Explorer
zebaldwin
Posted

Like everything else I've tried, I was praying so hard gluten was the answer, and so far, like everything else, it has done absolutely nothing. I have had chronic headaches and weakness and most recently brain fog (my scariest symptom)

I went gluten free on my own about 6 weeks ago after testing negative through the blood test.

The brain fog, headaches, and weakness in my arms and legs are the same.

I am in college, and this diet is a lot of added stress. Should I stop? Should I rule out gluten completely? I am assuming yes, but I am thinking of sticking with the diet for another week or 2.

I am seeing a new neurologist who also hasnt found anything except a D deficiency which I am taking a prescription for.

I feel so hopeless. Things like these that sound so promising just make life so much worse weeks down the road when they don't work (at this point, I just assume nothing will work)

Sorry for the depressing post. I'd appreciate an opinions or comments. Thanks!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


mushroom Proficient
mushroom
Posted

From what I have heard on here, the neurological symptoms of gluten intolerance take the longest to resolve. The common wisdom is to give the diet a strict trial for three months before you start concluding that it is not helping. I am sorry you are finding it so stressful, but I do think it is worth continuing the trial.

iamsarar Rookie
iamsarar
Posted

I Had gone through something similar. I was eating gluten free and not feeling better. I was going to give up but I decided I need to make sure I was doing things right. I found out that I had gluten in my lip gloss, shampoo, makeup and thinks like mouthwash had a cross contamination issue. I found other things that had a possible contamination. SO after getting rid of it ALL. Every thing! I bought a new toaster, cutting boards, mixing spoons and so on ( cheap stuff, I didn't spend a lot). I was for sure 100% gluten free inside and out, top to bottom and only then did I feel amazing and all the symptom went away and the fog lifted. I don't know it this would be the same for you but look at everything in your life that is by your mouth and make sure there is no gluten. Hope you feel better soon :)

zebaldwin Explorer
zebaldwin
Posted
  • Author

iamsurar,

how long were you on the gluten free diet with no change? And when you say NO change, was there literally nothing?

I just feel like if I am cutting 99% (even if I am missing something little) it should help SOME...

I have already checked toothpaste, mints, etc...I think I am cutting everything.

I was never the hypochondriac type, but now I am starting to freak out looking at all the negative tests and no answers...

I just can't help thinking cancer, or some crazy neurological disease.

Where does it stop? Do I go get catscans and everything else? (Ive had a brain MRI)

Its such a vicious cycle, because if you're not stressed and anxious starting out, it makes you that way.

I'm a pretty "tough" 21 year old guy...and this is the first time in my life I am really scared.

eatmeat4good Enthusiast
eatmeat4good
Posted

I'm sorry you are still feeling badly. Have you thought of secondary food intolerances? There is a running thread on here about Soy being very bad for some people and causing neurological problems and depression. I think before you quit the diet, you should start to cut out other things like dairy, soy, corn, fructose, nightshades. Do something like the Paleo diet which limits you to just meat, veggies and a little fruit. Nuts too of course. It could be other food intolerances making you feel so badly. I know soy does it for me. I just now connected it with headaches. I have been gluten free for 6 months and am still finding intolerances...the more I eliminate the better I feel. Check out the other posts on soy and see what you think. I don't think these intolerances last forever...just until you are well healed, but you might not start feeling that wonderful feeling of getting well until you find out what all is making you sick.

I hung on to cream in my coffee for a long time and then found out it really was part of the problem. Then eggs, then soy. Just keep trying things. If you go back to gluten I fear you will lose more ground. Good luck but remember casein and soy can also cause neurological and intestinal problems.

mushroom Proficient
mushroom
Posted

Its such a vicious cycle, because if you're not stressed and anxious starting out, it makes you that way.

I'm a pretty "tough" 21 year old guy...and this is the first time in my life I am really scared.

I hope I don't sound patronizing when I say that the first challenge to our invincibility strikes pretty hard, especially at 21. We are suddenly not in control of our life any more and it is scary dealing with the unknown. But you've got to believe in something, and only six weeks in I think you should still believe that this will eventually help you, especially if you have eliminated any possible source of cross-contamination (and if you haven't you should double check right now). . I was struck with melanoma at 23, and it was like someone hit me over the head with a hammer and I was not seeing clearly at all. It dominated my thoughts and fears. But I was determined it would not strike me down and here I am, an old lady (well some would say that, I don't :D ) and I survived a second melanoma and lived long enough to find out I was gluten intolerant after all this time. And to find out that gluten can give you rheumatoid arthritis and psoriasis. And that this needn't dominate your life either, although I do spend quite a bit of time here trying to help others overcome this bugaboo.

Hang in there and have faith, whatever faith you believe in, and come back here six weeks from now and tell me you are no better and I will tell you to look elsewhere perhaps :)

zebaldwin Explorer
zebaldwin
Posted
  • Author

Thanks eatmeat4good and Mushroom...

I have tried eliminating other things. I didnt eat dairy or soy or gluten for a good chunk of the six weeks. But being in college my choices for food are severely cut enough with gluten, so I added gluten and soy back (after no results either way)

I mean, for them, will it also take up to 3 months? It seems like trial and error, 3 months at a time, could take a long long time, and if my problem isnt an intolerance, I dont want to keep losing time and doing harm.

Its hard, and I know you all are in the same boat so I shouldn't complain...it's just taking over my life, and since its physical its not like I can just get over it...

sighhhh

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


mushroom Proficient
mushroom
Posted

Gluten, dairy and soy, all at once, for three months. That is the prescription no matter how hard it is. You do want to get better, right?? I added in lactose after two years in the diet, no problem. Probably could have done it sooner but I wanted to be sure. Never soy, and never gluten, ever. Nor nightshades nor corn, and at the moment no legumes or citrus. Maybe those will come back, maybe not.

Now, I know that college makes it harder and you want to hang with the guys and do regular guy things and not stand out as the oddball, I know all that stuff. But still I say, which is more important? Living a healthy life or "being one of the guys"? You have only one life to live. You can either make it a short, pain-filled one being one of the guys, or a long pain-free (perhaps?) life by not being afraid to do your own thing.

eatmeat4good Enthusiast
eatmeat4good
Posted

You are right...it is physical AND mental...and you cannot just get over it. I want you to know that I used to not "believe" in food allergies. I didn't. For years I thought all food was fine and those who didn't think so were just wrong and had something else they didn't know what it was. But the truth is...all that time...I was suffering with Celiac and other food intolerances. It took me until 47 to figure it out and to find out that you don't have to "believe" in something for it to be effecting you very badly.

I know it sounds like months of eliminating something is a long time. But if you don't eliminate it, it will still be effecting you badly and you will think you have something else. I spent my whole life that way. You don't have to. You can handle a few months of inconvenience and hassle eliminating the things that might be making you sick. I am just starting to really feel normal after 6 months of healing. It takes time...like up to 2 years. Hang in there. And really it is a good thing you are figuring this out at your age.

I think Mushroom is right. You should stick to it strictly for a few months more before throwing in the towel. You have nothing to lose. It may help you for the rest of your life if you puzzle it all out now. Best of luck, and you CAN do this.

To Mushroom...Wow! You have survived a lot! Thank you for all the writing and teaching and sharing and educating you do here for everyone. You are really a backbone for us who need to learn so much. Thank you for what you do.

iamsarar Rookie
iamsarar
Posted

iamsurar,

how long were you on the gluten free diet with no change? And when you say NO change, was there literally nothing?

I just feel like if I am cutting 99% (even if I am missing something little) it should help SOME...

I have already checked toothpaste, mints, etc...I think I am cutting everything.

I was never the hypochondriac type, but now I am starting to freak out looking at all the negative tests and no answers...

I just can't help thinking cancer, or some crazy neurological disease.

Where does it stop? Do I go get catscans and everything else? (Ive had a brain MRI)

Its such a vicious cycle, because if you're not stressed and anxious starting out, it makes you that way.

I'm a pretty "tough" 21 year old guy...and this is the first time in my life I am really scared.

No there was some change, I wasn't as tired and I still had brain fog but no headache. It was because I was feel a little better that made me look at everything....Also it was a couple of weeks before the fog lifted. All the best to you. I hope you figure it out. I am a believer that diet can change your health for the better....I also stopped eating beef, chicken and fish before the gluten free because of high blood pressure and cholesterol. I think eating vegetarian has greatly helped in my feel so much better.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. knitty kitty
      - knitty kitty replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      @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...
    2. captaincrab55
      - captaincrab55 replied to lmemsm's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

      Finding gluten free ingredients

      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...
    3. rei.b
      - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      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...
    4. knitty kitty
      - knitty kitty replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      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...
    5. rei.b
      - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      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.
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,132
    • Most Online (within 30 mins)
      7,748
    Exhausted-momma
    Newest Member
    Exhausted-momma
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • 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
      Finding gluten free ingredients

      By captaincrab55 · Posted

      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.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.