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:
    Join eNewsletter
    Donate

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Iam replied to Larzipan's topic in Related Issues & Disorders
      33

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

    2. - trents replied to Scatterbrain's topic in Sports and Fitness
      6

      Feel like I’m starting over

    3. - bobadigilatis replied to Larzipan's topic in Related Issues & Disorders
      33

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

    4. - cristiana replied to Scatterbrain's topic in Sports and Fitness
      6

      Feel like I’m starting over


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,300
    • Most Online (within 30 mins)
      7,748

    Philbin
    Newest Member
    Philbin
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Iam
      Yes.  I have had the tmj condition for 40 years. My only help was strictly following celiac and also eliminating soy.  Numerous dental visits and several professionally made bite plates  did very little to help with symptoms
    • trents
      Cristiana makes a good point and it's something I've pointed out at different times on the forum. Not all of our ailments as those with celiac disease are necessarily tied to it. Sometimes we need to look outside the celiac box and remember we are mortal humans just like those without celiac disease.
    • bobadigilatis
      Also suffer badly with gluten and TMJD, cutting out gluten has been a game changer, seems to be micro amounts, much less than 20ppm.  Anyone else have issues with other food stuffs? Soy (tofu) and/or milk maybe causing TMJD flare-ups, any suggestions or ideas? --- I'm beginning to think it maybe crops that are grown or cured with glyphosphate. Oats, wheat, barley, soy, lentils, peas, chickpeas, rice, and buckwheat, almonds, apples, cherries, apricots, grapes, avocados, spinach, and pistachios.   
    • cristiana
      Hi @Scatterbrain Thank you for your reply.   Some of these things could be weaknesses, also triggered by stress, which perhaps have come about as the result of long-term deficiencies which can take a long time to correct.   Some could be completely unrelated. If it is of help, I'll tell you some of the things that started in the first year or two, following my diagnosis - I pinned everything on coeliac disease, but it turns out I wasn't always right!  Dizziness, lightheaded - I was eventually diagnosed with cervical dizziness (worth googling, could be your issue too, also if you have neck pain?)  A few months after diagnosis I put my neck out slightly carrying my seven-year-old above my head, and never assigned any relevance to it as the pain at the time was severe but so short-lived that I'd forgotten the connection. Jaw pain - stress. Tinnitus - I think stress, but perhaps exacerbated by iron/vitamin deficiencies. Painful ribs and sacroiliac joints - no idea, bloating made the pain worse. It got really bad but then got better. Irregular heart rate - could be a coincidence but my sister (not a coeliac) and I both developed this temporarily after our second Astra Zeneca covid jabs.   Subsequent Pfizer jabs didn't affect us. Brain fog - a big thing for people with certain autoimmune issues but in my case I think possibly worse when my iron or B12 are low, but I have no proof of this. Insomnia - stress, menopause. So basically, it isn't always gluten.  It might be worth having your vitamins and mineral levels checked, and if you have deficiencies speak to your Dr about how better to address them?    
    • knitty kitty
      @NanceK, I do have Hypersensitivity Type Four reaction to Sulfa drugs, a sulfa allergy.  Benfotiamine and other forms of Thiamine do not bother me at all.  There's sulfur in all kinds of Thiamine, yet our bodies must have it as an essential nutrient to make life sustaining enzymes.  The sulfur in thiamine is in a ring which does not trigger sulfa allergy like sulfites in a chain found in pharmaceuticals.  Doctors are not given sufficient education in nutrition (nor chemistry in this case).  I studied Nutrition before earning a degree in Microbiology.  I wanted to know what vitamins were doing inside the body.   Thiamine is safe and nontoxic even in high doses.   Not feeling well after starting Benfotiamine is normal.  It's called the "thiamine paradox" and is equivalent to an engine backfiring if it's not been cranked up for a while.  Mine went away in about three days.  I took a B Complex, magnesium and added molybdenum for a few weeks. It's important to add a B Complex with all eight essential B vitamins. Supplementing just one B vitamin can cause lows in some of the others and result in feeling worse, too.  Celiac Disease causes malabsorption of all the B vitamins, not just thiamine.  You need all eight.  Thiamine forms including Benfotiamine interact with each of the other B vitamins in some way.  It's important to add a magnesium glycinate or chelate supplement as well.  Forms of Thiamine including Benfotiamine need magnesium to make those life sustaining enzymes.  (Don't use magnesium oxide.  It's not absorbed well.  It pulls water into the intestines and is used to relieve constipation.)   Molybdenum is a trace mineral that helps the body utilize forms of Thiamine.   Molybdenum supplements are available over the counter.  It's not unusual to be low in molybdenum if low in thiamine.   I do hope you will add the necessary supplements and try Benfotiamine again. Science-y Explanation of Thiamine Paradox: https://hormonesmatter.com/paradoxical-reactions-with-ttfd-the-glutathione-connection/#google_vignette
×
×
  • 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.