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

Help With Diagnosis Steps...


rachaelxfaith

Recommended Posts

rachaelxfaith Newbie

After exploding in an awful rash about 2 weeks ago, I talked to someone with Celiac disease and they suggested I get tested to see if I am, as well.

Symptoms I have include that blistery, itchy rash, dry, flaky scalp, constant fatigue, headaches, lactose intolerance, and what I thought were IBS symptoms- stomach pain, diarrhea, bloating, gas.

Have no idea how to go about getting tested, so I just made an appointment with an allergist for this Thursday.

Already started to go gluten-free- should I stay on the gluten until the test? The itching and bleeding is unbearable.

Also, am I supposed to see a GI doctor instead? Is the allergist the right person to go to first?

I am so lost. And miserably itchy.

Thanks for the help, in advance..


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



Celiac.com Sponsor (A8-M):



Eriella Explorer

There is no right or wrong answer. Because the test is Thursday, stay on full gluten until the test, when they will do a skin biopsy and possibly run blood work. I would also call your primary care physician and see if they can order a "Celiac Blood Pannel". They should know what that is, and may be able to run the test without you coming into the office.

Then, when meeting with doctors are done (especially if you have a blood test), go off gluten. Make sure you get rid of it all-- shampoo, soy sauce, toaster...). Then, see how you feel. It can take up to 2 months (but I was better 48 hours later and 100 times better a week later).

If your tests come back negative, stay off gluten for a full 2 months to see. You may be gluten intolerant or a celiac who doesn't produce antibodies. If your tests come back positive, welcome to our world :-)!

Good Luck!

EDIT: Your symptoms sound right and an allergist should be fine to detect the rash and the first place you should go, but a GP or a GI SHOULD be able to diagnose it as well (however, they often stink at it).

rachaelxfaith Newbie
There is no right or wrong answer. Because the test is Thursday, stay on full gluten until the test, when they will do a skin biopsy and possibly run blood work. I would also call your primary care physician and see if they can order a "Celiac Blood Pannel". They should know what that is, and may be able to run the test without you coming into the office.

Then, when meeting with doctors are done (especially if you have a blood test), go off gluten. Make sure you get rid of it all-- shampoo, soy sauce, toaster...). Then, see how you feel. It can take up to 2 months (but I was better 48 hours later and 100 times better a week later).

If your tests come back negative, stay off gluten for a full 2 months to see. You may be gluten intolerant or a celiac who doesn't produce antibodies. If your tests come back positive, welcome to our world :-)!

Good Luck!

EDIT: Your symptoms sound right and an allergist should be fine to detect the rash and the first place you should go, but a GP or a GI SHOULD be able to diagnose it as well (however, they often stink at it).

Thank you so, so much for your reassuring post. I was feeling quite lost.

I'll stick to your advice, and in the mean time, I'll browse around the forums.

Thanks again.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,085
    • Most Online (within 30 mins)
      7,748

    Littlefoot
    Newest Member
    Littlefoot
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      @MagsM, It concerns me that your physicians seem to be preoccupied with the concept of "classic celiac disease".  That suggests to me their knowledge of celiac disease may be dated and they don't have a concept yet for the "silent celiac" who doesn't manifest with classic GI symptoms.
    • MagsM
      I have copied in a summary of my latest bloodwork from ChatGPT below. My GP will not refer for any further investigation and given that I do not have gastric distress symptoms it doe seem that I do not have classic Celiac but may have some malabsorption issues. I am now considering just going forward with a gluten free regimen and tracking symptoms. I will see the Consultant Otolaryngologist tomorrow and will share these results. I have already ordered the B-Complex and Benfotiamine and will start that regimen soon. Any feedback and your amazing expertise truly appreciated... Key Immunological and Nutritional Findings Test Result Normal Range Interpretation Tissue Transglutaminase IgA.   <0.2 U/mL.      <7.0 =            Negative   Strongly negative — rules out celiac disease Endomysial Antibodies (IgA).    <10                                         Negative   Supports absence of celiac disease Total IgA                                       1.94 g/L            0.65–4.21.   Normal IgG / IgM                                      8.47 / 2.04 g/L                      Normal.      Normal immune status ✅ These results do not indicate immunodeficiency. IgA is sufficient to make celiac testing valid, and IgG/IgM are in normal range. ⚠️ Nutritional / Absorption Concerns TestResultNormal RangeInterpretation Folate (B9)        3.1 ng/mL.          3.1–20.5.       Low-normal — borderline deficient Total Protein.    63 g/L.                 64–83          Slightly low Ferritin.              33 ng/mL.           15–150.        Normal, but low-normal; could reflect depleted stores 📌 This constellation of results suggests possible subtle malabsorption, suboptimal nutrient intake, or a functional GI issue — even in the absence of celiac disease. 🔄 Implications for Ménière’s and Autoimmunity While there's no evidence of classic autoimmune disease or celiac, subtle immune dysregulation and non-celiac gluten sensitivity (NCGS) cannot be ruled out. Your symptoms and lab pattern could still fit with an immune-mediated or inflammatory trigger for Ménière’s flares. Borderline nutrient deficiencies (folate, protein) may affect inner ear function or neuronal stability, indirectly exacerbating symptoms. Nutrient absorption issues might stem from subclinical GI inflammation, dysbiosis, or food sensitivities. 💬 Suggested Talking Points for Consultant Could a functional immune or inflammatory mechanism be driving Ménière’s in the absence of overt autoimmunity? Does a trial of immunomodulatory therapy (e.g., steroids, antihistamines) make sense if flares persist despite dietary changes? Would referral to a GI specialist or dietitian be appropriate, given borderline folate, protein, and symptom profile? Continue gluten-free diet trial for 4–6 weeks to assess symptomatic improvement, even in absence of celiac serology. Explore possibility of non-IgE food sensitivities or mast cell activation, especially if symptoms are episodic and food-triggered.      
    • Wheatwacked
    • Mari
      Hi Vicky'  If you are hesitant to visit your medical provider and if this discomfort persists you may choose to do that. I do have some suggestions and how ai have delt with digestive problems not caused by gluten but likely a result of having the autoimmune reaction in my small intestine for all the years before going gluten free. Before I stopped eating gluten I had a leaky gut. The gluten inflammatory reaction let other food molecules get just far enough into the wall of the small intestine to be recognized as invaders so I began reacting to them at a very low level, not very noticeable.  When you eat a meal it goes into the stomach and is liquified in a highly acid environment. This may take up to 2 hours. This acidic fluid is then  released into the beginning of the small intestine where, as it is released, bile is squirted into it . The bile is very alkaline so it neutralized the acid.  Without that bile being available the liquid that is released from the stomach may remail too acid and cause discomfort. Many people use antacids to stop the burning but I don't do that because it did not get at the real cause. \\I wrote that I had developed other food intolerances or allergies that weren't noticeable when I was eating gluten foods. Except for hot peppers and all of the nightshade family.  I have mild reaction to other foods. Those reactions cause enough inflammation in my digestive system that impeded food from passing down the small intestine so that when the food was released from the stomach it had no place to go because the small intestine was still having difficulty pushing it along. When the stomach can't release the acid liquidified food down it tends to be forced up resulting in acid reflux.  I learned to do gentle massages of my abdomen and over the last 18 years eliminated many foods from my diet. What I did not realize, although many celias have reported this, is that once a person reacts to a food even tiny amounts of the food I have eliminated, will cause inflammation in my stomach and upper intestine I was getting these very small amount of reaction causing foods in supplements, by cross contamination  . Now if soy or corn, to name just 2, is on a label I don't buy it. Another suggestion is to drink enough water to keep yourself hylrated. That information is available online and depends on you height and weight. I am not a medical practitioner so what I wrote is only from my own experience and what I think about the causes of some of my digestive problems. 
    • Wheatwacked
      Hi @Stephanie Wakeman, Get your vitamind D blood level checked and supplement to raise to around 80 ng/dl or 200 nmol/L.  This is the natural upper limit and provides the best immune system. Vitamin D plays a role in regulating the immune system, and low levels may impair the immune system's ability to control allergic responses.  Vitamin D deficiency may be linked to an increased risk of developing allergies and experiencing more severe allergic reactions.  Vitamin D is one of many vitamin deficiencies caused by small intestine damage so unless you get enough sunlight or taking large doses of vitamin D, you will be deficient.      
×
×
  • Create New...