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

Considering Testing

nicole0392

By nicole0392
in Coping with Celiac Disease

Recommended Posts

nicole0392 Newbie
nicole0392
Posted

I have been dealing with stomach issues for 15 years. I have had every test imaginable done and have received no answers as to why I am sick every single day. With the love and support of my wonderful fiancee who doesn't want to see me sick daily he has spent hours on the internet trying to come up with answers. We are considering celiac disease. I eat a lot of gluten everyday and i am not getting any better. My only problem with this disease is that I do have random days where i feel ok and still eat gluten. is that common? also do I have to get tested or can i just go gluten free? my symptoms are bloating, stomach pain, loss of appetite, headaches, light headed feeling, nausea, vomiting, constipation and sometimes diarrhea, gas, FATIGUE. any suggestions or advice would be greatly appreciated.

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

Celiac.com Sponsor (A8-M):


Dixiebell Contributor
Dixiebell
Posted

Welcome!

All those sympotms could be celiac symptoms.

No, you don't have to do testing, but it might be to your benefit to so. It is just a simple blood test. At the very least I think you should get your vitamin levels checked and your thyroid.

If you do decide to go gluten free, make sure you get all your testing done first.

Skylark Collaborator
Skylark
Posted

Random days when you feel what you currently think is OK are common. Many celiacs feel so much better off gluten that they realize their OK days were actually still sort of sick. Yes, celiac could easily explain your symptoms.

Do get tested. It's good to know whether you are celiac, or just one of the millions of people who gets sick from gluten. The first stage is just blood tests and can ordered by your GP. You can make the decision about whether to go on with an endoscopy with your doctor's help depending on what the tests show.

nicole0392 Newbie
nicole0392
Posted
  • Author

Thank you for the replies. I think I will get my blood drawn. Although this is not an easy task for me because i have small veins that move around. In the past month i have had blood drawn 5 times. do they run specific blood tests for celiac disease? also i had an endoscopy done about a year ago. do they have to specifically look for something or would they have seen the signs with that test? I am so ready to start feeling better. I never have an energy and the constant headaches and stomach pains are getting old but I am terrified to give up my bread, pasta and candy. I tried gluten free bread once and it was terrible. how do you guys do it? should i have my son tested as well?

mushroom Proficient
mushroom
Posted

Yes, there are several different blood tests that they run looking for antibodies. They would not find these unless they were specifically looking. Much the same is the case of endoscopic biopsies. Sometimes the celiac damage is visible to the naked eye, but it is usually detected by microscopic examination of the biopsy samples. Normally five or six samples are taken because the damage is not uniform throughout the small intestine and is easily missed.

You do not have to give up bread, pasta and candy when you give up gluten, nor cookies and cake. There is some very tasty gluten free pasta around, Udi's makes very good bread, and there are lots of gluten free candies. Now admittedly some gluten free products are nasty (there is a thread running on the forum on our least favorites) but there are many very fine gluten free processed products out there, and a zillion recipes on the internet for making your own delicious treats.

If I were you I would definitely ask them to try and find one of your elusive veins and get the testing done. It may be negative, and it may even be a false negative :unsure: , but if it is positive you KNOW.

nicole0392 Newbie
nicole0392
Posted
  • Author

any tips on what to look for when reading labels? i am scared i will eat "hidden gluten." also how long was it before you noticed a difference?

mushroom Proficient
mushroom
Posted

Here is a link to a previous thread on detecting hidden gluten:

If you eliminate lactose as well as gluten initially, you should see a difference almost right away, fewer GI symptoms - bloating, cramping, diarrhea, etc.

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

Celiac.com Sponsor (A8-M):


Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      126,023
    • Most Online (within 30 mins)
      7,748
    StaciField
    Newest Member
    StaciField
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.1k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • StaciField
      My bone structure is disintegrating and I’m having to have my teeth removed

      By StaciField · Posted

      I had an ex ray yesterday and I was told that my bones in my jaw were broken and falling away. I have 2 front bottom teeth that are wiggling and I have to take them out. I am so scared of this as I have more broken teeth that I’m wanting removed. If I have them removed would I be able to get false teeth if I have a bone problem?? 
    • trents
      Son recently got diagnosed with Celiac disease

      By trents · Posted

      Welcome to the forum, @ShRa! First of all, celiac disease is not a food allergy. It is an autoimmune disorder. That is, the ingestion of gluten triggers the body's immune system to attack it's own tissues, primarily the tissues that line the small intestine. This causes inflammation. This inflammation produces certain antibodies that can be detected by serum testing. Over time, the inflammation damages the lining of the small intestine and compromises the efficiency of nutrient absorption since the small intestine (aka, small bowel) is the part of the intestinal track where essentially all of the nutrition in the food we eat is absorbed. Gluten is a protein found in three grains: wheat, barley and rye. In people with celiac disease, the immune system mistakes gluten as an invader. Two factors have to be present to develop active celiac disease. The first is the genetic potential. Two genes (and their variants), HLA-DQ2 and HLA-DQ8, have been tied to celiac disease. About 40% of the population has 1 or both of these genes but only about 1% of the population develops active celiac disease. That means there is a second factor that must come into play to turn the genes on such that they become active in producing celiac disease. This second factor is not well understood but it is thought to involve some kind of stress event. For example, a viral infection or other acute illness or even prolonged psychological/emotional distress. Apparently, for most with the genetic potential for celiac disease, this never happens. Your son has been diagnosed as a celiac via serum antibody testing. Normally, there is a second stage of testing involving an endoscopy with biopsy of the small bowel lining to microscopically check for damage. This second stage procedure is considered the gold standard of celiac disease diagnosis but is sometimes dispensed with if the serum antibody scores are quite high. Your son's tTG Ab-IGA score apparently qualifies for this in your PCP's opinion. The "normal" IGA (aka, "total IGA") score simply means he is not IGA deficient and is not a test for celiac disease per se. In the case of IGA deficiency, the tTG Ab-IGA score can present as a false negative. Since his total IGA is normal this is not an issue. The other celiac antibody test done was the Gliadin DGP Ab IgA and it was normal. Do not be concerned that one antibody test was high positive and the other was normal. This is typical. The tTG Ab-IGA is the most important one and the one test most ordered by doctors when checking for celiac disease. One concern I have going forward is the instruction from your PCP to have your son stop eating gluten before he sees the specialist. If the specialist wants to do an endoscopy with biopsy and a good amount of time elapses before that procedure happens, going gluten free now might allow for enough healing of the small bowel lining to invalidate the biopsy results. Kids heal fast! I would consider holding off on going gluten free unless your son's health is clearly in immediate danger by not doing so. I am linking two articles that might be helpful in. One is an overview of celiac serum antibody testing. The other is a primer for getting a handle on eating gluten free.  
    • ShRa
      Son recently got diagnosed with Celiac disease

      By ShRa · Posted

      My son, 13 had been complaining about the tummy aches since past few days. He lost quite a bit of weight in past few months. We thought it's because he has been playing soccer alot recently and also is not much intereseted in junk these days.  His doctor ordered Celiac panel with a few other bloodwork. Here are the results: TTG Ab,IgA | Normal value: <15.0 u/mL | Value: 104.2 IgA is normal Gliadin DGP Ab IgA is normal His PCP told us that he need to stop eating gluten right away as he has been diagnosed with celiac disease and has been now referred to specialist for further advise. I'm trying to understand gluten free diet and this disease further.  Any guidance on how to proceed now and what to expect would be appreciated
    • Scott Adams
      Daughter recently diagnosed with Celiac and I am questioning my results...

      By Scott Adams · Posted

      First off, I’m sorry to hear about the challenges you’ve been facing, both with your recent celiac concerns and the dermatitis you've been dealing with. It’s clear you’ve put in a lot of effort to figure this out, and it’s frustrating to still have lingering questions. Regarding your TTG-IgA result of 11.6 U/mL, you’re correct that many labs and celiac experts consider values above 10 to be indicative of possible celiac disease. However, interpretation can vary depending on the lab and the individual. It’s worth noting that slightly elevated levels can also sometimes occur with other autoimmune conditions, including Hashimoto’s thyroiditis. However, since you already have Hashimoto's and a strong family history of celiac (your daughter’s diagnosis), the most likely explanation is that you also have celiac disease. Here are a few steps you might consider to gain peace of mind: Consult a Gastroenterologist: They have more expertise in celiac diagnostics than a general PCP. They may recommend additional tests like an EMA (endomysial antibody) test or even genetic testing to confirm your predisposition further. Consider a Small Intestinal Biopsy: If there’s uncertainty, a biopsy remains the gold standard for celiac diagnosis. It can provide clarity, especially since your TTG-IgA is borderline. Monitor Symptoms on a Gluten-Free Diet: Since you already have another autoimmune condition and a chronic rash (which could resemble dermatitis herpetiformis, a skin manifestation of celiac disease), some doctors might suggest trying a strict gluten-free diet for a few months under supervision. If you notice a marked improvement, it might be telling. Keep in mind that if you go on a gluten-free diet before an endoscopy/biopsy, you will need to do a gluten challenge and eat lots of gluten daily for at least two weeks before the biopsy. As for your genetic results from 23andMe, having two copies of a celiac-associated gene (HLA-DQ2 or DQ8) does increase your risk of developing celiac disease considerably. However, about 30-40% of the general population carries these genes, and only a small percentage actually develop the disease. The genetic predisposition combined with your elevated TTG-IgA and symptoms could justify further investigation. Lastly, regarding your chronic "dermatitis," it might be worth bringing up the possibility of dermatitis herpetiformis to a dermatologist familiar with celiac disease. This condition is often misdiagnosed as eczema or another dermatitis type and may not respond well to typical creams. A skin biopsy taken near (not on) an affected area can help diagnose it.
    • BertoleAmur
      Has anyone found Ozempic affected their symptoms?

      By BertoleAmur · Posted

      I’ve been gluten-free for a while too, and I know how frustrating it can be when your body reacts unexpectedly. I haven’t personally experienced what you’re describing with Ozempic, but I did have a situation where I took a break from certain supplements and noticed my body felt a lot better.
×
×
  • Create New...