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

Does It Look Like Celiac?


raistlinm

Recommended Posts

raistlinm Newbie

My symptoms started in October 2010 with big armpit lumps (very painful and warm) in both armpits and Achy joints. (During this period I didn’t experience weight loss or headaches)

 

- Armpit lumps recurrent for this period on/off, except for the last three months.
- Recurrent abdominal pain and/or discomfort (Mostly in the lower right side, maybe the illeocecal junction and the cecum and discomfort  in the bladder area, rarely in the left side and back, also during the night)
- Bloating and Abdominal distension
- Fatigue (Gone with a gluten/dairy diet after a few days)
- Achy joints (sometimes muscular, mostly joints)
- Paresthesia with pain, in any part of the body, looks gone after starting PPIs medication, I think it was more acute when consuming caffeine drinks.
- Dizziness/brain fog, this went to maximum in two crisis when I couldn't even lay down or sleep, not even concentrate or eat anything, sick feeling, the only relieve was to walk.
- Diarrhea (food not digested and floating stool) and constipation during crisis, not very frequent I could guess that might be related to lactose, but not for sure.
- Ulcers in the tongue (mostly when I had a crisis) and sporadic pain in the ears.
- Higher than normal liver readings observed for as far as I can remember.

 

The symptoms that is more acute and intolerable is the last one dizziness and sick feeling, it comes mostly before passing stool but can last for the day or several days, to a degree that I cannot even stay in a chair having lunch or dinner with other people or even sleep, I need to go and walk.

 

I had some cases of vertigos, not that so frequently, sick feeling and dizziness appeared around one year ago, there are periods when it happens and period when it doesn't happen, during the last 6 months I had several mild crisis and two strong crisis when I went to the hospital very dizzy, I couldn't even sit down and I had high blood pressure at that time (I didn't get high blood pressure again).

 

I followed a gluten/dairy diet for some weeks and I got a very good improvement and I felt full of energy instead of constant fatigue.

 

Tests Done:

- IGS: igA: 1 agG: 2 agE: 9 (All very low and normal)

- Vitamines: Vitamine D 29 (low but normal), Copper a bit low

- Thyroid: All in the range but for TSH it was 3.2 (The range here is 0.3 - 4.2)

- Ultrasound scan: Seen a inflammation in the terminal ileum

- Stool Test, all normal except for Helicobacter P

- Bloodtests: All normal except monocytes a but high, and high readings of liver enzimes (95 first, after 75 and after 79 range 0-55), also triglicerids a but high.

- Colonoscopy: All Normal

- Gastroscopy: Severe erosion with ulcers and erythem in duodenus and stomach, early metaplasia without displesia seen, Helicobacter found.

- Biopsy of Stomach and Doudenus, one piece each (only), count <30% (celiac ruled out), lactose intolerance found.

 

Medication: Taking Vitamin D, finished triple therapy for helicobacter, taking probiotics and PPIs to heal the ulcers.

 

The doctor said that I can eat everything, nothing else found, the liver to be investigated, should I rule out celiac? Could it be Chrons?

 

I did some gluten challenge on my own,after some time without gluten, I felt a bit sick the next not too much, I continued taking gluten, no major sympthoms, a bit of pain in the ilecum and a low energy, but nothing else, I'm not sure if I should do home made tests, but I visited many doctors with no luck, I don't know what else to do, I'm thinking in NCGS or in taking a genetic test for celiac.

 

My day to day symthoms are mild, very mild, is more like low energy and very mild joint pain, but the crisis (I had 2) were very bad, a lot of pain in the illecum and other parts of the intestine, couldn't sleep, felt very dizzy and weak, couldn't eat or even rest in the sofa, those two crisis happened in the last 6 months, with up and downs the weeks after.

 

It looks like gluten-free diet makes a difference but I tried only once for a few weeks, need to confirm trying again, any ideas?

 

Could just be all related to Helicobacter? (humm liver and ilecum pain don't look like that)

 

I need to restest for Helicobacter in a couple of weeks after I finish my PPIs.


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



Celiac.com Sponsor (A8-M):



raistlinm Newbie

Also "Smooth Myscke antobody" came today as negative, does that mean that my higher liver readings are not related to an autoinmune issue like celiac?

nvsmom Community Regular

I think H. Pylori can cause stomach pain and ulcers in some people. It appears you have ulcers so that will cause you some problems. For people who have peptic ulcers, I believe it is recommended that the H. Pylori is erradicated.

 

Open Original Shared Link

 

Open Original Shared Link

 

I do not believe that it can cause vertigo, dizziness, joint pain, swollen glands, mouth ulcers or liver problems, but I am not medically trained. I would attribute those symptoms to something else. It could be celiac, or it could be some other autimmune problem.

 

 If your colonoscopy is normal, it is probably not Crohn's.

 

Liver problems can be associated with celiac disease, but also with other issues. What did your doctor think caused your elevated liver enzymes?

Open Original Shared Link

 

Many celiacs are lactose intolerant because the small intestinal villi which makes lactase (which deals with lactose) are destroyed. Often the ability to digest lactose returns as healing of the intestines occurs. I wonder why they said you are lactose intolerant but your villi are fine?

 

I have never heard of "Smooth Myscke antobody". Is that the correct test or spelling?

 

Vertigo can be related to inner ear problems (as well as diet and autoimmune diseases). I have a friend who gave up all grains and that improved most of her vertigo; giving up coffee also helped... but that is just anecdotal.  Did you doctor hazard a guess as to the cause of that?

 

Before going gluten-free, you might want to try celiac blood tests. The most common tests are:

  • tTG IgA and tTG IgG
  • EMA IgA
  • DGP IgA and DGP IgG
  • total serum IgA  (a control test)

To have accurate tests, you must be consuming 1-4 gluten servings (ie. bread slices) per day for approximately 6 weeks prior to testing.

 

Going dairy free won't affect your tests but could improve your symptoms. I would give up milk products immediately.

 

After testing, when you try the gluten-free diet again (to rulle out non-celiac gluten intolerance - NCGI), eat gluten-free for at least 3 months before deciding if it is helping. Some cases of NCGI and celiac take months to years to clear up some symptoms. I am still dealing with many symptoms and I am almost one year gluten-free. It can take a lot of time.

 

Good luck to you. I hope you find some answers soon.  :)

Deaminated Marcus Apprentice

The Celiac villus biopsy of one sample is worth squat. Not enough samples taken.

 

Get the blood tests such as nvsmom wrote.

 

Here's the Celiac panel I did:

 

Total IgA
Transglutaminase IgA      tTG-IgA
Deaminated Gliadin IgA   DGP-IgA
Deaminated Gliadin IgG   DGP-IgG

 

 

Eat 4 slices of bread for at least 12 weeks.
Open Original Shared Link

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

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

      High DGP-A with normal IGA

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

      Finding gluten free ingredients

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

      High DGP-A with normal IGA

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

      High DGP-A with normal IGA

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

      High DGP-A with normal IGA


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,131
    • 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)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • knitty kitty
      @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
      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
      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
      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
      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.