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

Verbal Diagnosis--Push For More Testing?

Kerceli

Recommended Posts

Kerceli Newbie
Kerceli
Posted

Hello!

I'm posting in need of some advice. I have been mostly gluten free for years now (and now strict gluten free since my recent problems..to be explained). I would always take bites of non gluten free things here and there if I wanted a

taste and never worried about contamination, but probably within the last 6 months I noticed I could no longer take little bites of things with gluten because I got horrible stomach aches and headaches. In August, I went out for dinner with friends and it was family style. I was stupid and didn't speak up about my needs so I ended up eating a lot of gluten containing food thinking oh well I'll just bear the stomach ache (this was the most non gluten-free I had had in a longggg time). Well it made me so horribly sick for a week. I couldn't eat at all. I was nauseas 24/7, had C and D, depression, anxiety, cloudy head, body aches.... Just overall felt like HELLLLL.

I called my doctor asking for a blood test. It came out negative. I then asked for a endoscopy. My doctor said I would have to eat gluten for two weeks in order for anything to show up regarding celiacs. I told him the sickness I endured was so horrible I couldn't do it again. He said there is no other option for testing though. He placed 'celiac disease' in my medical record. I am now living as a celiac... Worried about contamination, checking labels feveriously... I have found since being more careful, I react to contamination issues now, which is a first. I feel like I have all the symptoms of celiacs, but do I just go about my life saying I'm celiac when I don't really know for sure?? Any advice or thoughts would be helpful. Thanks so

much guys.

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

Your doctor has confirmed you are celiac and it is in your medical record plus your body tells you clearly when you eat gluten. IMHO you have a great doctor. Make sure he does a vitamin and mineral panel on you to check your levels and do urge 1st degree family members to get tested.

Takala Enthusiast
Takala
Posted

You can at least call yourself severely gluten intolerant. You could also opt for over the counter genetic testing, if you were curious to see if you do indeed have the official genes which go along with celiac. That doesn't prove anything, but can put you in the class of celiac disease being the more likely probability. You could say your diagnosis is based on a gluten challenge failure. But the "celiac" in the medical records will in some regards help you in the future if you develop related conditions, because then there is an official "reason" to test you or suspect that you may have said related conditions, because you are at higher risk. And it also means that when you undergo any medical procedures or get a pharma prescription, you have a reason to tell them to be sure you don't come in contact with gluten. Be sure to put this information in at anywhere you get prescriptions filled, also, under the "allergic to" warnings- to avoid gluten, wheat, rye, barley.

If your relatives and friends take it more seriously with the "celiac" label, then that may also be a factor in what you chose to use.

DavinaRN Explorer
DavinaRN
Posted

My blood test was negative (my endocrinologist ran it for me because I would feel sicker once I ate to raise a low blood sugar than I did with the low). She explained that the test wasn't 100% accurate, but there really is non-celiac gluten intolerant. She offered referral to GI for further testing if I needed diagnosis. I opted not to and have been gluten free almost 10 weeks; feeling better than I have in a very long time. With research, I'm thinking I have had issue since late teens possibly. Wondering what my primary doctor will have to say.

Kerceli Newbie
Kerceli
Posted
  • Author

Hey guys thank you all so much for your responses and advice. Takala i didnt think about putting in my med record an allergy to wheat, rye, barley, etc. thanks everyone this community is invaluable!

gatita Enthusiast
gatita
Posted

I agree you have a very advanced doctor. Because I don't have the word "celiac" in my record, I'm having a hard time getting a GI referral that my insurance will cover. It's very frustrating....

So it sounds like your diagnosis is a good thing that may help you get any additional testing you need.

Kerceli Newbie
Kerceli
Posted
  • Author

Hi gatita, my doctor told me there is nothing more that can be done if I don't want to have gluten for two weeks and then go get a endoscopy. So I guess other than signaling doctors of my "allergy" (at the least) its good. But I wish I could actually find out. I need to check out the over the counter genetic testing.

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

Hi gatita, my doctor told me there is nothing more that can be done if I don't want to have gluten for two weeks and then go get a endoscopy. So I guess other than signaling doctors of my "allergy" (at the least) its good. But I wish I could actually find out. I need to check out the over the counter genetic testing.

Please do keep in mind that genetic testing is only a small part of the diagnostic process. There are folks with the celiac associated genes that don't develop celiac and there are diagnosed celiacs that don't carry one of the two most commonly tested for genes. In the long run it is your bodies response to gluten that is the best diagnostic tool we have at present.

Madagascar Rookie
Madagascar
Posted

i had the genetic test run by prometheus labs - they test for 2 genes. the one that came up positive was the "A" gene. interestingly, we were going to have my DH tested by Xterra (not sure if i have that name right, but they do a cheek swab for $150) and discovered that they don't test for the A gene, only the B gene.

in other countries they test for up to 23 genes. so . . . genetic testing can be helpful, but it's not everything.

also, Prometheus labs said i was not likely to have celiac disease based upon where on the genetic strand my gene was, but i clearly have it. i think there is value in having the genetic test done if you have children, but there is obviously so much room for error that you can't go solely on it. i also had the antibodies done and my only positive response was in the TTG that came in at 29 with a positive diagnosis at 30. the Prometheus lab test for antibodies and genes cost . . . dun dun dun $940. i didn't know before i requested it how much it would cost, but because i have 3 young adult kids, we wanted to know. don't know yet how much the insurance will cover, but through me getting tested and learning i do have one gene, my brother and his kids have all gone gluten free, and my 3 kids have all gone gluten free. we all had some signs, but not all the same (some skin, some digestive, some mental). everyone is feeling better, so it was worth it.

the gold standard test, however, is how one responds to the gluten-free diet. so with or without a diagnosis, if you feel better, go with it.

kerid Newbie
kerid
Posted

you can get the stool test. since the bowels are where the damage is being done, it makes sense to test there. on the website, they even say that you don't need to eat gluten first, as that can cause devasting effects to the person, and the antibodies are usually there for a while. here's the link to read up on it: (excellent read!!!) we are all getting the test done in january.

Open Original Shared Link

Kerceli Newbie
Kerceli
Posted
  • Author

Thanks guys!!!! :)

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...