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

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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      129,567
    • Most Online (within 30 mins)
      7,748

    Silver82
    Newest Member
    Silver82
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Your genetic test results confirm that you carry the highest-risk markers for celiac disease, specifically the HLA-DQ2 haplotype (while being negative for HLA-DQ8). The fact that both HLA-DQA1*05 and HLA-DQB1*0201 appear twice means you inherited identical copies from each parent, making you homozygous for these genes. This double dose of the DQ2.5 haplotype is significant because it indicates an even stronger genetic predisposition to celiac disease compared to those who only inherit one copy. Research suggests that people with this homozygous pattern may have a higher likelihood of developing the disease, potentially more severe immune responses to gluten, and a stronger association with dermatitis herpetiformis (which aligns with your diagnosis). While this genetic profile doesn’t guarantee worse symptoms, it does reinforce why strict gluten avoidance is critical for you. Since you’re already diagnosed, the main takeaway is that your results explain your biological susceptibility—no further genetic counseling is needed unless you have family planning questions. The repeating variants simply mean both parents passed you the same high-risk alleles, which is why your body reacts so strongly to gluten. Ultimately, your diagnosis and management remain the same, but this insight helps underscore the importance of lifelong dietary diligence.
    • Scott Adams
      It sounds like you and your daughter are navigating celiac disease with a lot of care and dedication, and it’s wonderful that you’re prioritizing her health and growth during this critical time. Since her antibody levels and growth have plateaued, tightening up her diet by avoiding eating out (except at dedicated gluten-free places) is a smart move—even if it’s challenging socially. Many parents of celiac kids report significant growth spurts once gluten exposure is minimized, so there’s hope she’ll catch up if her levels improve. As for the future, while her growth window closing may reduce some risks, celiac is lifelong, and staying as strict as possible will likely always be best to avoid long-term complications, even if occasional cautious outings become manageable later. Navigating this with a teenager is tough, especially with spontaneous social events. For unplanned outings, keeping safe snacks (like GF protein bars, nuts, or fruit) in her bag or your car can help. To boost nutrition, try sneaking in variety where you can—like lentil or chickpea pasta instead of rice pasta, or adding veggies and proteins to her favorite dishes. Involving her in meal planning might help with pickiness, and connecting with other celiac families or support groups could provide social strategies and emotional support. It’s exhausting, but you’re doing an amazing job—your efforts now will set her up for a healthier future. Hang in there!
    • Scott Adams
      This is good news--I hope we can get this done on a national level!
    • Scott Adams
      I use a blender and have made various juice recipes over the years. 
    • captaincrab55
      Pharmacies personnel need training to prevent cross contamination.     
×
×
  • Create New...