Jump to content

  • 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):

Not Sure If Gluten Intolerance, Would Love Help And Or Advice!

nkmichel

Recommended Posts

nkmichel Newbie
nkmichel
Posted

I am 28 and my whole life I've felt sick. Doctors and family always told me I just have a "weak stomach" and that I'm a hypochondriac (sp?). For the past 4 or 5 years, I 've had more seemingly unrelated symptoms; severe GERD, numbness and tingling in hands and feet, joint pain, headaches and migraines, chronic nausea,severe stomach pain, fatigue, and anxiety and depression. So far I've been misdiagnosed with anxiety, migraines, endometriosis, fibromyalgia, and stomach ulcers.I've undergone 2 MRI's, x-rays, countless blood work, 1 laporoscopy,an abdomen ultrasound, and an endoscopy and colonoscopy. All I found out was that I am severely B12 and Iron anemic, every other test or procedure produced negative results and all my doctors are treating me as if I'm crazy. I've had several other friends suggest celiac's/gluten allergy but when the biopsy of my small intestine came back negative, I didn't think that was it. Now I've found out that you can have a negative biopsy but still have gluten intolerance. So I've scheduled an appoinment with an allergist on Wednesday to talk more to him about it. My question is this; has anyone here had a negative biopsy before? And if I've cut out gluten for a week, will that result in a negative blood test? I've been gluten free for 3 days now, and at first I started feeling better, I went to sleep without too much pain for the first time in years, but I think I may have accidently had some gluten, because today I am feeling horrible again. Basically, I'm totally lost and depressed and looking for answers. I know many others have felt this way, but I'm just so sick and tired of being sick and tired. Any answers? Suggestions?? I'd REALLY appreciate any help at this point!!!

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

Celiac.com Sponsor (A8-M):


taynichaf Contributor
taynichaf
Posted

Sounds like you have a problem with gluten!

 

I had a negative biopsy and I am still gluten intolerant.

 

I suggest you keep eating gluten until ALL testing is done. Not eating gluten could mess up test results. After you see the allergist, I think it would be good to see a regular doctor to have the full celiac panel blood testing done and out of the way! THEN you should be able to go gluten free :)

 

It sucks waiting... I was on and off gluten for 2 months because I kept deciding I needed more testing and all that stufff. It's so much easier to wait than to wonder the rest of your life!

 

Btw, some people have negative biopsies and positive blood tests.

freeme808 Apprentice
freeme808
Posted

I totally agree with Tayni!

I know its really hard to continue the gluten once you find out that it's causing all your problems...but staying on it for testing reasons is really important to get accurate testing. And trust me, you want to get them ALL out of the way now, then you don't have to wonder down the line and torture yourself all over again. 

Hang in there! I know it's tuff!

I feel really low today. I've completely lost that pizazz that I had when I was gluten-free, I've put back on the 12lbs that I lost due to bloating, water retention, gluten crap food...My mood has been so low, more tired, foggy brain, all the usual ugly symptoms. There are these moments where I'm looking at the reality of being on gluten for one more month(by the time I get tested it'll be a total of 3 1/2 months back on it), like, wow...if I had just pushed harder before I went gluten-free to get these tests-now Im stuck waiting this much longer. I thought by July this would have been a thing of the past- I thought Id weigh less by then. But aghh, I need to get these test done. So like I said, hang in there. I was in the same spot as you back in Jan...and I just wish I had pushed for the all the testing back then(doctors thinking Im crazy aside). For now, as far as my mood goes, I'm just trying to fake it til I make it. Basically trying to trick my brain into believing that its happy by thinking about positive things. It's worked before. ;)

 

 

Also, this site it full of wonderful support. :)

nkmichel Newbie
nkmichel
Posted
  • Author

Thank you for the advice. I will start eating gluten again and hopefully get some good news with the testing, and I'll also make an appointment with my regular MD for the full work up!! Thank you so much :)

nvsmom Community Regular
nvsmom
Posted

Welcome to the board. :)

Have you had all of the celiac blood tests yet? The full panel is:

tTG IgA and tTG IgG

DGP IgA and DGP IgG

EMA IgA

Total serum IgA (a control test)

AGA IgA and AGA IgG

The AGA tests are the only tests that are thought to show Non-Celiac Gluten Intolerance (NCGI) but it is not a widely accepted view. The other tests show intestinal damage. The DGP tends to pick up celiac the earliest, and the EMA is only positive when the villi damage is extensive. Any GP can order those blood tests (they are not allergy tests). As the others said, keep eating gluten until testing is done.

NCGI has the same symptoms as celiac disease except for the villi damage, and treatment is the same too: lifelong adherence to the gluten-free diet.

When you try going gluten-free again, whether it is due to celiac disease or to see if you have NCGI, be aware that people often hit a withdrawal after a few days. It can last a week to a month. I personally felt much worse at that time; I had a horrible migraine, and I was so tired and grumpy. Blah. It sounds like you might have to expect a withdrawal again too.

Good luck with your appointment.

Archived

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

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

  • Member Statistics

    • Total Members
      134,082
    • Most Online (within 30 mins)
      10,442
    Joe B
    Newest Member
    Joe B
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      Sigh. I posted this yesterday based on the Safeway website. I went back again today to their website to double check. On the page where they are selling Vanilla Bean flavor, it has a distinct Certified Gluten Free label. Other flavors on the Safeway website didn't have the gluten-free statement. Today I went into the store. None of the flavors I looked at, including Vanilla Bean, have a Gluten Free statement. Is it safe? Who knows. The ingredients are either safe or nearly safe (some have "natural flavor"). There are warnings about "contains milk and soy" but not about wheat - this implies they are safe, but again, who knows. On the other hand, every flavor I checked of their Slow Churn line of ice creams has wheat as an ingredient. 100% not safe.
    • knitty kitty
      Edy's and Dreyer's ice cream

      By knitty kitty · Posted

      Do keep in mind that many of the newly diagnosed have lactose intolerance.  This is because the villi lining the intestinal tract are damaged, and can no longer make the enzyme lactAse which breaks down the milk sugar lactOse.  When the villi grow back (six months to two years), they can again produce the enzyme lactAse, and lactose intolerance is resolved.  However, some people (both those with and without Celiac Disease) are genetically programmed to stop producing lactase as they age.   Do be aware that many processed foods, including ice cream, use Microbial Transglutaminase, a food additive commonly called "meat glue," used to enhance texture and flavor.  This microbial transglutaminase has the same immunogenicity as tissue transglutaminase which the body produces in response to gluten in people with Celiac Disease.  Tissue Transglutaminase (tTg IgA) is measured to diagnose Celiac Disease in blood tests.  Microbial Transglutaminase acts the same as Tissue Transglutaminase, causing increased intestinal permeability and inflammation.   New findings show that microbial transglutaminase may be able to trigger Celiac Disease and other autoimmune and neurodegenerative diseases.   Microbial Transglutaminase is not required to be listed on ingredients labels as it's considered a processing aid, not an ingredient in the U.S.  Microbial Transglutaminase has been GRAS for many years, but that GRAS standing is being questioned more and more as the immunogenicity of microbial transglutaminase is being discovered. Interesting Reading:  Microbial Transglutaminase Is a Very Frequently Used Food Additive and Is a Potential Inducer of Autoimmune/Neurodegenerative Diseases https://pmc.ncbi.nlm.nih.gov/articles/PMC8537092/
    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      There is a 10 year old post in this forum on Edy's and Dreyer's ice cream. The information is somewhat outdated and the thread is closed to further comment, so here is a new one. Edy's And Dreyer's Grand Vanilla Bean Ice Cream - 1.5 Quart is labeled "Gluten Free". This is a different answer than years gone by. I don't know the answer for any other flavor at this moment. On 1 May, 2026, Edy's website says: "As a general rule, the gluten in Edy's and Dreyer's® frozen dessert products is present only in the added bakery products, such as cookies, cake or brownies. We always label the eight major food allergens on our package by their common name. We recommend to always check the label for the most current information before purchasing and/or consuming a product. The exception to this rule is our Slow Churned French Silk frozen dairy dessert, which contains gluten in the natural flavors." https://www.icecream.com/us/en/brands/edys-and-dreyers/faq It seems that Edy's and Dreyer's are more celiac-friendly than they were 10 years ago. Once I found enough information to make today's buying decision, I stopped researching.
    • Aretaeus Cappadocia
      EDG 3 years ago fine, now it shows focal villous blunting,

      By Aretaeus Cappadocia · Posted

      probably not your situation @Mimiof2, but allow me to add one more to @trents list of celiac-mimics: "olmesartan-induced sprue-like enteropathy"  
    • knitty kitty
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      My dad had an Abdominal Aortic Aneurysm.  Fortunately, it was discovered during an exam.  The doctor could feel my dad's heart beating in his stomach/abdomen.  The aneurysm burst when the doctor first touched it in surgery.  Since he was already hooked up to the bypass machine, my dad survived ten more years.  Close call! Triple A's can press on the nerves in the spinal cord causing leg pain.  I'm wondering if bowing the head might have increased the pressure on an aneurysm and then the nerves.   https://gulfcoastsurgeons.com/understanding-abdominal-aortic-aneurysm-symptoms-and-causes/ Abdominal Aortic Aneurysm Presenting as a Claudication https://pmc.ncbi.nlm.nih.gov/articles/PMC4040638/
×
×
  • Create New...