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. - Aretaeus Cappadocia replied to Clear2me's topic in Gluten-Free Foods, Products, Shopping & Medications
      4

      Gluten free nuts

    2. - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      5

      Related issues

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

      Going for upper endoscopy today

    4. - Russ H replied to Butch68's topic in Gluten-Free Foods, Products, Shopping & Medications
      4

      Guinness, can you drink it?

    5. - Scott Adams replied to Borky's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Gluten food test strips


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,270
    • Most Online (within 30 mins)
      7,748

    Hope2024
    Newest Member
    Hope2024
    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

    • Aretaeus Cappadocia
      Azure Standard (https://www.azurestandard.com/) is one of my gluten-free vendors. I've purchased nuts, "grains", flours, and many other products there. If you are not familiar with Azure, you have to set up an account (no cost) and get your purchases either via shipping (expensive) or "drop" (free if you buy a reasonable minimum). Search their website for a drop location in your area. Each drop location has a local volunteer(?) coordinator who coordinates with the local customers. I go to a drop 4-5 miles from my home that delivers every 2 weeks. We seem to range from 8-18 customers at a given delivery. The downside of the drop is that you have to be there when they say. They give you a few days notice of the precise time, though, and they are punctual. Their pricing relative to other vendors for various products ranges from best price to overpriced, so you have to shop and compare. Quality is mostly good but once in a while you get a dud - however they've been very responsive to giving me a credit on the few occasions when I've complained. In my opinion, they are not as transparent about gluten as they could be. Some products are labeled "gluten free" and so far I trust that. Many products are labeled "Azure Market products are re-packaged by Azure for your convenience in a facility that meets Food Safety Modernization Act (FSMA) standards, including an approved allergen control program." I've corresponded with them over this and they all but say this means gluten free. I've come to trust this, with a little nervousness, but I wish they would be more explicit. They also sell a lot of gluten-containing products. Frankly, I think they are overlooking a business opportunity to become a trusted source for the gluten-free community by not being more clear about gluten. Among Azure products I've purchased are "Walnuts, Baker's Pieces, Raw", "Cashews, Raw, Large White Pieces, Organic" and "Missouri Northern Pecan Grower Pecans Fancy Native, Raw, Halves". The walnuts and cashews were very good and the pecans were fabulous. For almonds, I've been buying Blue Diamond unsalted when they go on sale (mostly from Safeway). The salted ones are probably fine too but the flavored ones I avoid now that I am gluten-free. I also buy products including nuts from CostCo (cashews, shelled pistachios). Their nuts usually contain a "made in a facility that processes wheat" statement, which is scary. I've contacted customer service about various Kirkland products and they will usually give you a response <<for a specific lot>> whether it really was made in a wheat facility (sometimes yes sometimes no). For the "Kirkland Signature Fancy Whole Cashews, Unsalted, 40 oz" and "Kirkland Signature Shelled Pistachios, Roasted & Salted, 1.5 lbs", I got a "safe" answer and I ate them. I got an "unsafe" answer once for "Kirkland Signature Fancy Whole Cashews with Sea Salt, 2.5 lbs" and "Kirkland Signature Dry Roasted Macadamia Nuts, Salted, 1.5 lbs" and I don't look at these anymore. Again, these answers were given for specific lots only. They will accept an unopened return for cash if you find out you don't want it. Costco also sells "Kirkland Signature Super Extra-Large Peanuts, 2.5 lbs" that are labeled gluten free. My celiac kid eats them all the time. I pretty much only eat food that I prepare myself from scratch. My celiac symptoms are not that overt, so I can't say for certain I could identify a glutening. However, my antibody levels dropped 25 fold (into normal range) since my dx earlier this year. Hope this helps.
    • Jmartes71
      Doterra literally has saved my life hands down.Nateral supplements that really are pure grade and does work organically with ones body. I had to stop all my nateral supplements to be a good puppet for medical so I can get the financial help that my body won't allow me to do more days than not these days, every day with menopause.....Not feeling well.Had to switch " medical team" because I was told I wasn't celiac though I am gluten-free since 1994! I am also positive HLA-DQ2. I think doctors down play it because on quest lab work it states " However 39% of the U.S  general population carry these HLA-DQ variants, as a consequence, the presence of HLA-DQ2 or  DQ8 or both variants is not perse diagnostic of celiac disease". Hintz the down playing of celiac disease......This needs to change because doctors seem to down playe it because when I showed the past 2nd and 3rd  doctors that I waisted my time on this year showed my that line and absolutely down played it.4th pcp this year.I live in Patterson California and would love for a few of us to go to mayors office and make this disease heard
    • Midwesteaglesfan
      Back home after the scope.  Dr said as soon as he got in there it was clear signs of celiacs.  Must be a decent amount of damage.  I don’t remember the post procedure conversation as the anesthesia was still wearing off but that’s what my wife says anyway.  Still the biopsy results to come back but pretty definitive and now I get to learn to live gluten free
    • Russ H
      There are several blogs where people test different beers using commercially available gluten testing kits. Guinness definitely tests positive for gluten. Something to be mindful of is that in some regions, foodstuffs containing less than 20 ppm gluten can be sold as 'gluten free'. However, due to the volume involved, a UK pint of beer at 19 ppm would contain more gluten than the generally accepted as safe daily limit of 10 mg. I have seen gluten-free beers testing at between "undetectable" and 5-10 ppm. I have also seen a report of a positive home test on Daura Damm, which is sold as gluten-free beer - the manufacturer did not respond to the tester's query.
    • Scott Adams
      Welcome to the forum! Do you mean this article, and if so, I don't think these are available yet.  
×
×
  • 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.