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

Feeling Like It Finally Is Making A Little Sense

SLB5757

Recommended Posts

SLB5757 Enthusiast
SLB5757
Posted

So I got a text message from my mother the other day stating my Uncle's Gastro told him to go gluten-free. Only time will tell if it helps him or not, but my uncle (mothers brother), has had stomach issues just as bad as mine are. He is also a skinny guy, gets the anxiety issues, dental problems, and many other celiac related issues. The Gastro did a scope and bloodwork and confirmed no Celiac - but still thinks he needs to go gluten-free.

I just find it very odd that him and I have had the testing done, test negative, still have all of the symptoms - and feel so much better going gluten-free (Of course we will have to see how he does with the diet). I mean the family history is there with my brother having severe tummy issues, my Uncle, myself - and my uncle stated to me that my Mothers Uncle also had severe tummy issues. So there is a link of some sort - just wish we could figure it out.

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

Celiac.com Sponsor (A8-M):


ang1e0251 Contributor
ang1e0251
Posted

If your curious, you could have the genetic testing. That might show you the link your interested in. It doesn't dx celiac disease, but can tell you if you posess the genetic makeup that makes you vulnerable to gluten.

ravenwoodglass Mentor
ravenwoodglass
Posted

You had a wise GI doctor. The false negative rates are really high unfortunately but GI's are getting a bit more knowledgeable about that lately. Personally I would forgo the genetic testing until the US starts to routinely recognize that more than just DQ2 or 8 are celiac related genes. It may not be a long wait though. WebMD had a recent article that states they now are finding that there are more genes associated with celiac. The total now is up to 7 although in other countries the number is 9 so the US has two more to go.

ThatlldoGyp Rookie
ThatlldoGyp
Posted
So I got a text message from my mother the other day stating my Uncle's Gastro told him to go gluten-free. Only time will tell if it helps him or not, but my uncle (mothers brother), has had stomach issues just as bad as mine are. He is also a skinny guy, gets the anxiety issues, dental problems, and many other celiac related issues. The Gastro did a scope and bloodwork and confirmed no Celiac - but still thinks he needs to go gluten-free.

I just find it very odd that him and I have had the testing done, test negative, still have all of the symptoms - and feel so much better going gluten-free (Of course we will have to see how he does with the diet). I mean the family history is there with my brother having severe tummy issues, my Uncle, myself - and my uncle stated to me that my Mothers Uncle also had severe tummy issues. So there is a link of some sort - just wish we could figure it out.

Hi, He could be like my brother, a non-allergic, non-celiac gluten senstive or intolerant (depending on what doctor you talk to). My brother has the genes, has not triggered into the full autoimmune disease as I have, but must still maintain a gluten free diet or he basically becomes non-functional with migraine pain, the big "D" , RLS, brain fog and exhaustion or any combination of those. He has a good doctor to tell him to go ahead and go gluten-free. I hope he feels better soon!

SLB5757 Enthusiast
SLB5757
Posted
  • Author

Thanks guys :)

I hope he can feel better soon. I have tried to give him advice as much as I know (still a novice on the subject myself, but at least I have the internet and my blackberry for crunch time). My uncle is in his 60's, and does not use the internet. He will most likely rely on the library and my mother and I for resources. My mother used to take him food every Sunday because his wife died last year - so she said she will start educating herself on gluten-free cooking since there are now two in the family that are gluten-free. She reads probably 7 books a week,and is online as well, so I am fairly certain she can help her brother through this. His gastro directed him to a nutritionist in our town - and unfortunately it is the same nutritionist that I saw who wasn't familiar with Celiac disease and had limited knowledge of "gluten free". While talking on the phone with him he asked me "so do I just look for "gluten" on the labels"? he has a lot to learn.

Even through what I have learned in a month I managed to get "glutened about 3 days ago from either Taco Bell (tostada shell, chicken, cheese - and rice) or a buffet I went to locally ( I know - dumb idea, but I was really careful having only 3 items maybe - baked potato, grilled chicken, corn chips with cheese sauce, salad with bacon bits and sunflower seeds and cheese sauce). I have spent three days with my tummy almost attacking itself being distended - having constant hunger, and feeling "out there, moody, anxious, and emotional" and then two days of diarreah following. My tummy today - 4 days later is MUCH better -so I know I got into something. I just hope I can give him some guidance through my trials with the gluten-free diet. We just do not have good mentors/education sources locally :(

OK...I will stop going on about this. I just appreciate everyones comments and wanted to share about the family link. My brother was diagnosed with as many allergies as I had - so I am sure he would benefit as well but he is a stubborn Army guy :)

have a great 4th of July weekend all :)

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,130
    • Most Online (within 30 mins)
      7,748
    Tony White
    Newest Member
    Tony White
    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.