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

Do I Get Testing Or Not?

zachattack

Recommended Posts

zachattack Newbie
zachattack
Posted

Hi all. I've been wondering about my symptoms for years, and am finally seeing a GI next week. I thought it was gluten about a year ago, and cut it out, and my symptoms went away for a bit, but have returned lately. I thought maybe I was getting accidentally glutened. I'm starting to consume TINY bits of gluten every day so I don't get a false negative while doing my testing and I'm MISERABLE. This is what I'm going through:

-Bloating and fullness after eating
-A rash all over my legs, arms, butt (it kinda looks like this, but it doesn't itch: Open Original Shared Link
-Itching, tingling face
-Diarrhea sometimes, but not always
-Often undigested food in tarry, black stools (sorry if TMI)
-Itchy, often sore throat that sometimes feels like it's closing up
-Stomach aches and cramps (often extremely painful)

Does this sound familliar to anyone else? Lots of people in my family think it's just IBS and purely psychological bulls$#&, but I don't think so. Just looking for some validation here as to whether I should get the testing. My girlfriend's cousin just tested positive and the only symptom he ever had was the rash.

If it is celiac, is there a possibility I've severely damaged my guts? (The undigested food makes me real... uneasy.)

Thanks a ton for the help.

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

Celiac.com Sponsor (A8-M):


NatureChick Rookie
NatureChick
Posted

It sounds as if you have been doing a little mini-experiment on yourself to see what your reactions might be. Unfortunately, there really isn't a way to do an armchair diagnosis.

• Bloating and fullness could be celiac, but can be a reaction to lots of different things.
• Rash - can't see the picture, but rashes can also be a symptom of an allergic or autoimmune reaction.
• Diarrhea might only be a symptom if larger amounts of gluten are consumed, but can also be caused by all sorts of food intolerances and digestive problems.

• The stools - tarry and black normally means that there is bleeding somewhere in the digestive tract.
• Itchy, sore throat is an indication of an allergy.
• Stomach aches and cramps - could be celiac-related but can also be caused by ulcers or vitamin deficiencies (B12) and plenty of other things.

For now I'd keep an open mind about possible causes and hold off on doing a gluten challenge until you talk to the GI. He may start with doing some sort of stool test to see if there is blood present. But while there, ask him to test you for vitamin deficiencies as well (They can also help narrow in on possible causes because some are more prevalent in particular health problems). And because of the itchy throat, seeing an allergist may be another appointment to make before considering eating wheat at all. If you are getting a scratchy throat from just a crumb and you do have a wheat allergy, eating an entire piece of bread might bring on a worse reaction.

Note that a gluten challenge requires that you consume the equivalent of two pieces of bread a day for 4-6-8-12 weeks (different sources) to ensure accurate celiac blood-test results. 

Also, be prepared to not get all of the answers you seek with just one doctor's appointment. I know, not what you want to hear, but getting a proper diagnosis is often a long-term ordeal.

But glad to see that you're asking questions and looking for answers on your own. And I'm sure someone else here on the forum who has more experience with allergies or ulcers or gluten reactions different from my own can offer different thoughts once they get back from their Fourth of July picnics.
 

nvsmom Community Regular
nvsmom
Posted

I agree that those could all be possible celiac symptoms, but an itchy throat does sound allergy related. It is possible to have celiac disease AND and allergy to wheat; someone around here had that double whammy although i can't remember who it was.

 

IBS... Someone aound here said that IBS is a doctor's way of saying, "I Be Stumped".  It's just a chronic collection of GI symptoms with a label.  Most celiacs had IBS symptoms beforethey were treated.  And many many people around here with celiac disease or non-celiac gluten esnsitivity (NCGS) were told that it's all in our head.  Unless your family are medical professionals, I would take their advice with a grain of salt.  Of course that can be said about getting info from us too, but at least some of us read books, medical journals and go to seminars about this specific disease.  ;)

 

Most celiacs have a damaged intestine when they are diagnosed. In fact, that is how doctors diagnose us - they look at the intestinal villi damage in an endoscopic biopsy or they do blood tests to find the autoantibodies that are doing the intestinal damage. It's not a great set-up. 

 

It is possible that your black tarry stools are a result of intestinal damage to the upper intestines due to celiac disease, or it could be from some other damage to the esophagus or stomach.  You might want to take a picture of your stools to show your GI when you go in next week so he knows what you are talking about.

 

In fact, it's a good idea to keep a food and symptoms journal to bring in to him (foods eaten symtpoms, and the times the meal and symptoms occured).  A written list of symptms is always a good idea to give the doctor.

 

A gluten challenge for blood tests is usually 8-12 weeks of eating the equivalent of 1-2 slices of bread per day.  If you are wanting to really start your gluten challenge before seeing the GI, it sounds like you may have to eat more gluten, and with the severity of your reaction, I'm not sure that would be wise. That being said, if you have been eating close to that amount of gluten, and you are able to continue for another week, it might enable the doctor to test you immediately. Some people's blood tests will show positive after only 2 weeks on gluten (but it is usually large amounts of gluten).

 

If you can, request as many celiac disease tests as possible. The full panel is ofte considered to be this:

ttG IgA and tTG IgG - most common tests

DGP IgA and DGP IgG - newer tests often good for detecting early disease

EMA IgA - similar to the tTG IgA but detects more advanced disease

total serum IgA - a control test

AGA IgA and AGA IgG - older and less reliable tests

 

Good luck and welcome to the board.

Archived

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

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


  • Member Statistics

    • Total Members
      131,188
    • Most Online (within 30 mins)
      7,748
    Leeila
    Newest Member
    Leeila
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Ginger38
      Food Allergies

      By Ginger38 · Posted

      So I recently had allergy testing for IGE antibodies in response to foods. My test results came back positive to corn, white potatoes, egg whites. Tomatoes, almonds and peanuts to name a few.  I have had obvious reactions to a few of these - particularly tomatoes and corn- both GI issues. I don’t really understand all this allergy versus celiac stuff. If the food allergies are mild do I have to avoid these foods entirely? I don’t know what I will eat if I can’t  have corn based gluten free products 
    • Kris2093u4
      Bread choice for a newbie

      By Kris2093u4 · Posted

      Geography makes a difference.  I'm in the West and Trader Joe's gluten-free bread tastes great and is a better price than most gluten-free breads sold elsewhere in my area.  
    • JForman
      7yo struggling!

      By JForman · Posted

      We have four children (7-14 yo), and our 7 year old was diagnosed with NCGS (though all Celiac labs were positive, her scope at 4 years old was negative so docs in the US won't call it celiac). We have started her on a Gluten Free diet after 3 years of major digestive issues and ruling out just about everything under the sun. Our home and kitchen and myself are all gluten-free. But I have not asked my husband/her dad or her other siblings to go completely gluten-free with us. They are at home, but not out of the home. This has led to situations when we are eating out where she has to consistently see others eating things she can't have and she has begun to say "Well, I can't have <fill in the blank>...stupid gluten."  How have you supported your gluten-free kiddos in the mental health space of this journey, especially young ones like her. I know it's hard for me as an adult sometimes to miss out, so I can't imagine being 7 and dealing with it! Any tips or ideas to help with this? 
    • Jane878
      My mo,ther married a bread making when I was 4

      By Jane878 · Posted

      By the time I was 5 I had my first auto0immune disorder, Migraine headaches, with auras to blind me, and vomiting, sensitivity to light and sound. I was 5 years old, and my stepfather would have pizza night, milling his own flour, making thick cheesy gluten pizza, that I would eat and the next day, I would have serious migraines, and my mother & stepfather did nothing about my medical problems. When I was 17 in my first year at college, I was diagnosed with my 2nd known auto-immune disorder, Meniere's disease. I was a elite athlete, a swimmer, and soccer player. And once again my parents didn't think anything of understanding why I had a disorder only older people get. Now after my mother passed from Alzheimer's disease she also suffered with living with gluten. She had a rash for 30 years that nobody could diagnose. She was itchy for 45 years total. My brother had a encapsulated virus explodes in his spleen and when this happened his entire intestines were covered with adhesions, scar tissue and he almost lost his life. He has 5 daughters, and when I finally was diagnosed after being pregnant and my body went into a cytokine storm, I lost my chance to have children, I ended up having Hashimoto's disease, Degenerative Disc disease, and my body started to shut down during my first trimester. I am 6ft tall and got down to 119lbs. My husband and I went to a special immunologist in Terrace, California. They took 17 vials of blood as we flew there for a day and returned home that evening. In 3 weeks, we had the answer, I have Celiac disease. Once this was known, only my father and husband made efforts to change their way of feeding me. At the family cabin, my stepfather & mother were more worried that I would ruin Thanksgiving Dinner. It wasn't until one of my cousins was diagnosed with Celiac disease. They finally looked into getting Gluten Free flour and taking measures to limit "gluten" in meals. He did nothing but ask for me to pay for my own food and wi-fi when I came to the cabin to stay after our house burned down. When he informed my mother, they proceeding to get into a physical fight and she ended up with a black eye. The is just more trauma for me. Sam had no interest in telling the truth about what he wanted. He lied to my mother that he had asked my husband if I could pay for "food" when he asked Geoffrey if I had money to pay for my wi-fi. My mother hates when he spends so much time on the computer so he lied and said I could pay for my own food. I will remind you I weighed 119lbs at this time. (At 6ft) that is a very sick looking person. Neither parent was worried about my weight, they just fought about how cheap my stepfather was. As my mother was diagnosed with Alzheimer's disease in 2014. He had her sign over the will to a trust and added his children. He had no testimonial capacity at the time, so she signed without proper papers. Making this Trust null and void. When I gave my brother my childhood home, my mother stated I would be getting an equal part of inheritance to the house on Race. It currently worth 2.0 million $. I got nothing, and my stepfather has since disowned me b/c of my claim and he knows that my mother would never have left it uneven between my biological brother and myself. She sat me and my husband down, as we lived at the Race Street house and treated and took care of it as our own. My brother took over b/c he was going through a horrific divorce and needed a home so he could get a better custody deal with his soon to be ex-wife who was a Assist DA for Denver. She used the girls against him, and he & I were the primary caregivers. We, Judd and I spent the most time with them pre the divorce. Once Judd moved into the house, he threw all of my mother, grandmother and my family heirlooms out to the Goodwill. Nobody told my mother about this as she was going through cancer treatment and had Alzheimer's disease in her mother and her sister. My stepfather and biological brother took advantage of this matter, as I called a "family council" that my brother just never could make it to at the last moment. All of the furnishing, kitchen ware, everything was in the house my brother just moved into. He had had 2 weddings, I chose to elope b/c my stepfather ruined my brother's first wedding by talking about his relationship with my brother in front of my dad and his entire family, insulting him and having my grandfather leave the ceremony. It was a disaster. My stepfather just plays dumb and blames my father for the slight. I was the only child not to have a wedding. So, my mother and stepfather never had to pay for a thing. My mother had had an agreement with my father he'd pay for college and all medical issues with their kids, myself and Judd. So truly my mother never had to pay for anything big for me in her entire life. I am looking for anyone that has had a similar story, where they grew up in a household that had a baker that regularly milled flour and ate gluten. What happened to you? DId you suffer from different auto-immune diseases b/c of living with a baker using "gluten" Please let me know. I have been looking into legal ways to get my stepfather to give me what my mother had promised, and he erased. Thank you for listening to my story. Jane Donnelly  
    • trents
      Blood results

      By trents · Posted

      Possibly gluten withdrawal. Lot's of info on the internet about it. Somewhat controversial but apparently gluten plugs into the same neuro sensors as opiates do and some people get a similar type withdrawal as they do when quitting opiates. Another issue is that gluten-free facsimile flours are not fortified with vitamins and minerals as is wheat flour (in the U.S. at least) so when the switch is made to gluten-free facsimile foods, especially if a lot of processed gluten-free foods are being used as substitutes, vitamin and mineral deficiencies can result. There is also the possibility that she has picked up a virus or some but that is totally unrelated to going gluten-free.
×
×
  • Create New...