Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

New To This With A Few Questions...

jamiecasabellameeks

Recommended Posts

jamiecasabellameeks Apprentice
jamiecasabellameeks
Posted

Okay, so here is my story in a nutshell...I have had stomach "issues" and GERD for as long as I can remember.  Honestly, I have just gotten used to it...always told I probably had IBS.  However, a few months ago I went to my doctor because I was having severe joint/muscle pain and fatigue.  I had no idea what was causing it.  I thought arthritis!  Anyway, he ran x-rays. Everything was fine...except for some spinal arthritis.  He asked me if I had ever been tested for Sprue...Well, I didn't even know what it was.  After blood work, I tested positive for the Anti-reticulin antibodies and Vitamin D deficiency but nothing else.  I had a biopsy two days ago.  The GI doc told me my small intestine looked inflamed and that I should know the biopsy results soon.  I started gluten-free that day PRAYING I could start to feel better soon.  I'm nervous that my biopsy will be negative and I still won't know the cause of everything.  Now, the joint pain is not that severe.  I am suffering from fatigue, dizziness, and nausea.  I just don't want to move.  I don't want to even look at food because I feel like it's the culprit.  HELP! I feel so lost.  I live in a city where no one seems to even understand Celiac...all very skeptical.  

 

I also might add that I have had 3 babies in less than 4 years and have been under A LOT of work stress lately...thinking this could have been a trigger.

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

Celiac.com Sponsor (A8-M):


shadowicewolf Proficient
shadowicewolf
Posted

That can easily be a trigger.

 

Well, since you've had the biopsy done, I'd think it would be safe to say to try the gluten free diet.

 

There is quite a bit of info here for ya:

 

https://www.celiac.com/forums/topic/91878-newbie-info-101/

nvsmom Community Regular
nvsmom
Posted

Welcome to the board.  :)

 

The most common blood tests for celiac are:

  • ttg IgA and ttg IgG
  • EMA IgA (sometimes EMA IgG)
  • DGP IgA and DGP IgG
  • total serum IgA (and sometimes IgG)
  • AGA IgA and AGA IgG (older tests not used as much now)

The ARA test your doctor used is not used much anymore, and as I don't know much about it I can't comment on it. If you haven't had the other blood tests done, you might want to resume eating gluten and get them done soon. I only recommend them because some people like/need more than one positive test before they are willing to accept the gluten-free diet for life, and there is a chance your biopsy will be negative if the doctors miss the damaged parts.

 

If you do think you might want further testing/proof in the future, you should probably do it now. Many celiacs find that their reactions to gluten can become more severe after being gluten-free so if you resume eating gluten in the future, it could be a bad experience.

 

Read lots of books and look around the website and you'll be educated in celiac disease in no time. If you feel worse for a few weeks after going gluten-free, hang in there. Some of us go through a withdrawl and tend to feel worse before we get better.

 

Best wishes to you.  :)

GFinDC Veteran
GFinDC
Posted

Hi Jamie,

 

The other part of celiac testing besides the endoscopy is blood anitbodie tests.  So, if you haven't had those done yet I'd suggest waiting until those are done before starting the gluten-free diet.  If you stop eating gluten before all the testing is done it can negatively affect the test results.

 

One other thing that is common enough with celiac disease is thyroid problems.  You could ask your doctor to test your thyroid levels and also thyroid antibodies.  They are both just blood draws for the test samples, so easy stuff.

 

Both celiac and thyroid can cause fatigue.  The damage that celiac causes to the intestine prevents proper absorption of nutrients (vitamin etc), and that can cause fatigue.  After you go gluten-free, the immune system slowly winds down it's attack on the gut and it can heal.  Then you can begin absorbing nutrients better and begin to feel better too.  That process of healing can take a while tho, and it pays to be patient with yourself.  Often the process of healing seems to be kind of back and forth, better and worse etc.

 

The good news is that celiac is one disease that you can control without drugs or surgery.  It takes some concentrated effort at first to learn the gotchas and how to avoid gluten in your diet.  But it gets to be your normal diet after a while.

 

Starting out it is really helpful to switch to a whole foods diet of meals that you cook from scratch yourself.  Avoid all processed foods for a few months until you get things settled down some in your gut.  Processed foods are things like boxes of cereal, pre-made things like bread and cookies, or frozen meals etc.   If you stick to foods from the perimeter of the grocery store that is usually where they keep the whole foods.  Fruits, meats, nuts and veggies are great for you.

 

Many of us need to stop all dairy for a while until the gut has healed up some.  But after that many can start eating dairy again.

 

Welcome to the forum and feel free to ask questions. :)

 

jamiecasabellameeks Apprentice
jamiecasabellameeks
Posted
  • Author

Welcome to the board.  :)

 

The most common blood tests for celiac are:

  • ttg IgA and ttg IgG
  • EMA IgA (sometimes EMA IgG)
  • DGP IgA and DGP IgG
  • total serum IgA (and sometimes IgG)
  • AGA IgA and AGA IgG (older tests not used as much now)

The ARA test your doctor used is not used much anymore, and as I don't know much about it I can't comment on it. If you haven't had the other blood tests done, you might want to resume eating gluten and get them done soon. I only recommend them because some people like/need more than one positive test before they are willing to accept the gluten-free diet for life, and there is a chance your biopsy will be negative if the doctors miss the damaged parts.

 

If you do think you might want further testing/proof in the future, you should probably do it now. Many celiacs find that their reactions to gluten can become more severe after being gluten-free so if you resume eating gluten in the future, it could be a bad experience.

 

Read lots of books and look around the website and you'll be educated in celiac disease in no time. If you feel worse for a few weeks after going gluten-free, hang in there. Some of us go through a withdrawl and tend to feel worse before we get better.

 

Best wishes to you.  :)

THANK YOU FOR YOUR COMMENT! I'm PRETTY sure he completed all of the other blood work but it was negative.  He did the ARA in addition to the other.  So, I guess:  Is it still likely that I have Celiac if some blood work was negative but some was positive? What other condition could cause my small intestine to be inflamed (since I at least know that much from EGD)?

 

I went to the dietician yesterday, as well, but I'll be honest...I feel like I have learned more online that from my doctors.  It just amazes me how LITTLE doctors know about this...

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. captaincrab55
      - captaincrab55 replied to FayeBr's topic in Coping with Celiac Disease
      1

      Corn reaction and ataxia

      Welcome FayeBr, I suffered 56 years before being diagnosed in 2009. Corn is an issue for many of us here and hopefully after a period of healing you may be able to add it back into your diet. It took me over a year to finally accept that corn was bothering my gut. Early last year I was able to start adding foods with very small amounts of corn back into...
    2. Dora77
      - Dora77 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Is it safe to eat? (airborn flour)

      I’m an asymptomatic celiac— I didn't show much symptoms even when I was eating gluten (prior to diagnosis), but I’m still worried about malabsorption if I’m exposed to gluten. My mom made gluten‑free dough on the kitchen table and then later worked with gluten dough on the same table. When she was forming the gluten‑free dough into a wrap (before cooking it ...
    3. FayeBr
      - FayeBr posted a topic in Coping with Celiac Disease
      1

      Corn reaction and ataxia

      Hi all. I was diagnosed 3 years ago after suffering for many years of misdiagnosis. There are a couple of things I’d like to ask. The first is about corn. Do you react to it like gluten. My dietician told me that corn should never be a problem for me and suggested probiotics with corn starch and other corn ingredients in. I had stayed away from corn for 2...
    4. knitty kitty
      - knitty kitty replied to Bebygirl01's topic in Related Issues & Disorders
      6

      How many people here are aware that there are 9 types of gluten that Celiacs should be aware of?

      Lectins are carbohydrate storage proteins. Different plants have different lectins. Gluten is a lectin, but not all lectins are gluten. Lectins are made up of a protein "spine" with a bunch of carbohydrate molecules stuck to it. During digestion, the carbohydrates get pulled off, but that protein "spine" can get stuck to cell membranes. In...
    5. knitty kitty
      - knitty kitty replied to Eldene's topic in Food Intolerance & Leaky Gut
      18

      Oats gluten free?

      Lectins are carbohydrate storage proteins. Different plants have different lectins. Gluten is a lectin, but not all lectins are gluten. Lectins are made up of a protein "spine" with a bunch of carbohydrate molecules stuck to it. During digestion, the carbohydrates get pulled off, but that protein "spine" can get stuck to cell membranes. In...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      128,404
    • Most Online (within 30 mins)
      7,748
    Dianne Robinson
    Newest Member
    Dianne Robinson
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.9k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • captaincrab55
      Corn reaction and ataxia

      By captaincrab55 · Posted

      Welcome FayeBr,  I suffered 56 years before being diagnosed in 2009.  Corn is an issue for many of us here and hopefully after a period of healing you may be able to add it back into your diet. It took me over a year to finally accept that corn was bothering my gut.  Early last year I was able to start adding foods with very small amounts of corn back into my diet.  Starting in January I began eating small portions of corn without GI issues.  Your other health issues my soon fade away with a strict gluten-free diet.   Good Luck   
    • Dora77
      Is it safe to eat? (airborn flour)

      By Dora77 · Posted

      I’m an asymptomatic celiac— I didn't show much symptoms even when I was eating gluten (prior to diagnosis), but I’m still worried about malabsorption if I’m exposed to gluten. My mom made gluten‑free dough on the kitchen table and then later worked with gluten dough on the same table. When she was forming the gluten‑free dough into a wrap (before cooking it on the pan), it was uncovered. Would you say it is unsafe to eat? I think she washed her hands etc. but I am worried about airborn gluten flour, which could have landed on my food. Also should she do gluten dough in the house? Is it safe for me or should it be avoided? I have signs of EPI and wonder if celiac causes it. My blood work for antibodies to see how my diet is going were negative. But I dont know how reliable they are, because when I was regularly eating may contain gluten food in these times, they were still negative. Now the only "may contain gluten" food I eat are basic spices like pepper, which I am looking to replace with certified glutenfree pepper.
    • FayeBr
      Corn reaction and ataxia

      By FayeBr · Posted

      Hi all. I was diagnosed 3 years ago after suffering for many years of misdiagnosis. There are a couple of things I’d like to ask. The first is about corn. Do you react to it like gluten. My dietician told me that corn should never be a problem for me and suggested probiotics with corn starch and other corn ingredients in. I had stayed away from corn for 2 years beforehand and should have trusted my gut (no pun intended) because after 2 capsules, I have had the worst reaction for a long time. All the usual gut problems (pain and D) migraine, fatigue, aches and pain, tinnitus etc etc. (I could go on) Does anyone else react to corn like this?  Also, for years now I have been going downhill with my health neurologically. I have to now walk with a stick as I have big  balance issues, I fall, I have numbness in legs and pins and needles. I feel like I can’t control my body with movements. They have said possible MS, fibromyalgia, ME etc etc. But my dietician has said it’s classic gluten ataxia symptoms and to see a professor here in the UK who specialises in this field. Does anyone else have this and what symptoms do you have? Thank you 
    • knitty kitty
      How many people here are aware that there are 9 types of gluten that Celiacs should be aware of?

      By knitty kitty · Posted

      Lectins are carbohydrate storage proteins.  Different plants have different lectins.  Gluten is a lectin, but not all lectins are gluten.   Lectins are made up of a protein "spine" with a bunch of carbohydrate molecules stuck to it.  During digestion, the carbohydrates get pulled off, but that protein "spine" can get stuck to cell membranes.  In Celiac, our immunity kicks on when exposed to gluten.  Gluten is made up of a string of polypeptides.  One particular segment in that string, the 33-mer segment, triggers our built-in celiac immunity to produce antibodies against it when it sticks to HLA DQ genes.  Unfortunately, our body makes tissue transglutaminase, used in cell membranes as support structures, which also contains segments of that 33-mer polypeptide.  The anti-tissue transglutaminase antibodies (ttg antibodies) attack the tissue transglutaminase on our cell surfaces, as well as the gluten in celiac disease.   In acquired immunity - our body gets sick once, learns to produce antibodies against the thing causing the illness, and "remembers" so it can make more antibodies against it if it's encountered again.   Our body can "learn" to attack those protein "spines" of lectins that may be stuck to cell surfaces.  To lessen the probability that the body will "learn" to attack other lectins in addition to the gluten lectin, avoiding all grains while the immune system is reacting to gluten is a great idea.   Lectins can be irritating to the gastrointestinal system.   Lectins can stimulate IgE (allergic) reactions.  Lectins can cause mast cells to release histamine. Lectins can be difficult to digest.  Lectins can be fermented by gastrointestinal bacteria and yeasts, causing gas, bloating and diarrhea or constipation.  Small Intestinal Bacterial Overgrowth and Candida overgrowth both have symptoms similar to Celiac Disease.  Corn lectins are more apt to be problematic than most other lectins.   Avoiding lectins in the early stages of going gluten free can help reduce other gastrointestinal symptoms and speed up recovery. I have a horrible response to corn, maize, zein.  I break out with Dermatitis Herpetiformis blisters if I consume corn or products made with corn derivatives.   But, there's no gluten in corn or other grains.  Gluten and that 33-mer polypeptide are only in barley, wheat and rye.  And some breeds of oats.   Try a low histamine, low carbohydrate, low Fodmap, grain free, Paleo diet like the Autoimmune Protocol Diet to see how much better you can feel.   It's not always gluten; the immune response is just going crazy.   https://pmc.ncbi.nlm.nih.gov/articles/PMC1115436/
    • knitty kitty
      Oats gluten free?

      By knitty kitty · Posted

      Lectins are carbohydrate storage proteins.  Different plants have different lectins.  Gluten is a lectin, but not all lectins are gluten.   Lectins are made up of a protein "spine" with a bunch of carbohydrate molecules stuck to it.  During digestion, the carbohydrates get pulled off, but that protein "spine" can get stuck to cell membranes.  In Celiac, our immunity kicks on when exposed to gluten.  Gluten is made up of a string of polypeptides.  One particular segment in that string, the 33-mer segment, triggers our built-in celiac immunity to produce antibodies against it when it sticks to HLA DQ genes.  Unfortunately, our body makes tissue transglutaminase, used in cell membranes as support structures, which also contains segments of that 33-mer polypeptide.  The anti-tissue transglutaminase antibodies (ttg antibodies) attack the tissue transglutaminase on our cell surfaces, as well as the gluten in celiac disease.   In acquired immunity - our body gets sick once, learns to produce antibodies against the thing causing the illness, and "remembers" so it can make more antibodies against it if it's encountered again.   Our body can "learn" to attack those protein "spines" of lectins that may be stuck to cell surfaces.  To lessen the probability that the body will "learn" to attack other lectins in addition to the gluten lectin, avoiding all grains while the immune system is reacting to gluten is a great idea.   Lectins can be irritating to the gastrointestinal system.   Lectins can stimulate IgE (allergic) reactions.  Lectins can cause mast cells to release histamine. Lectins can be difficult to digest.  Lectins can be fermented by gastrointestinal bacteria and yeasts, causing gas, bloating and diarrhea or constipation.  Small Intestinal Bacterial Overgrowth and Candida overgrowth both have symptoms similar to Celiac Disease.  Corn lectins are more apt to be problematic than most other lectins.   Avoiding lectins in the early stages of going gluten free can help reduce other gastrointestinal symptoms and speed up recovery. I have a horrible response to corn, maize, zein.  I break out with Dermatitis Herpetiformis blisters if I consume corn or products made with corn derivatives.   But, there's no gluten in corn or other grains.  Gluten and that 33-mer polypeptide are only in barley, wheat and rye.  And some breeds of oats.   Try a low histamine, low carbohydrate, low Fodmap, grain free, Paleo diet like the Autoimmune Protocol Diet to see how much better you can feel.   It's not always gluten; the immune response is just going crazy.   https://pmc.ncbi.nlm.nih.gov/articles/PMC1115436/
×
×
  • Create New...