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

I'm So Frustrated, Please Help Me Out!

lyoung2

Recommended Posts

lyoung2 Rookie
lyoung2
Posted

Here's my story

First Dr. in August of 2004 did blood work and colonoscopy not sure what he was going to find. His assistant called 1 week later and said b/w showed celiac disease and get on the gluten-free diet, which I did. When I called back 2 months later to discuss my progress he literally laughed at me for going gluten-free because my b/w was only partially marked by celiac disease. Here are my results.

Blood work from Dr.'s lab:

IgA <20

IgG H39 (moderate to stong positive)

Ttg <20

So, I went ahead and did some testing of my own with Kimball and Enterolab to show him. He of course blew those away also because he said I still didn't have enough markers for celiac disease. See test below.

Kimball Genetics cheek swab:

DQ2 (DQA1*05/DQB1*02) negative

DQA1*0501 or *0505 detected

DQB1*0201 or *0202 not detected

DQ8 (DQB1*0302) positive

DQB1*0302 detected

EnteroLob stool sample:

IgA 39 units (negative <10)

Ttg 37 units (negative <10)

Fecal Fat 88 units (negative <300)

I also tested positive for yeast (21 units) and milk (27 units).

I went for a second opinion with another Dr. who has experience with celiac disease. He also mentioned that "normally" the only confirmed diagnosis that a Dr. will accept is an endoscopy. He did agree that I did not have enough of the celiac disease markers as well.

So after being gluten-free for 8 months, I went off the diet for 4 weeks, feeling horrible and having my migranes return (which went away after 2 months gluten-free). Well, you guessed it, a negative biopsy.

Could it just be that I have an intolerance to wheat and not celiac disease? I just don't know what to do next. I'm thinking of just keeping a food diary for a few months if I have to and mark all symptoms down and take it back to him. I'm just so angry that I can't get a conclusive answer. I've also thought about trying the IBS diet and seeing what results I have with that, but my brain says that the Enterolab results just can't be wrong and I should stay away from the wheat.

Any feedback would so greatly be appreciated.

Laura

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

Celiac.com Sponsor (A8-M):


lyoung2 Rookie
lyoung2
Posted
  • Author

Here's my story

First Dr. in August of 2004 did blood work and colonoscopy not sure what he was going to find. His assistant called 1 week later and said b/w showed celiac disease and get on the gluten-free diet, which I did. When I called back 2 months later to discuss my progress he literally laughed at me for going gluten-free because my b/w was only partially marked by celiac disease. Here are my results.

Blood work from Dr.'s lab:

IgA <20

IgG H39 (moderate to stong positive)

Ttg <20

So, I went ahead and did some testing of my own with Kimball and Enterolab to show him. He of course blew those away also because he said I still didn't have enough markers for celiac disease. See test below.

Kimball Genetics cheek swab:

DQ2 (DQA1*05/DQB1*02) negative

DQA1*0501 or *0505 detected

DQB1*0201 or *0202 not detected

DQ8 (DQB1*0302) positive

DQB1*0302 detected

EnteroLob stool sample:

IgA 39 units (negative <10)

Ttg 37 units (negative <10)

Fecal Fat 88 units (negative <300)

I also tested positive for yeast (21 units) and milk (27 units).

I went for a second opinion with another Dr. who has experience with celiac disease. He also mentioned that "normally" the only confirmed diagnosis that a Dr. will accept is an endoscopy. He did agree that I did not have enough of the celiac disease markers as well.

So after being gluten-free for 8 months, I went off the diet for 4 weeks, feeling horrible and having my migranes return (which went away after 2 months gluten-free). Well, you guessed it, a negative biopsy.

Could it just be that I have an intolerance to wheat and not celiac disease? I just don't know what to do next. I'm thinking of just keeping a food diary for a few months if I have to and mark all symptoms down and take it back to him. I'm just so angry that I can't get a conclusive answer. I've also thought about trying the IBS diet and seeing what results I have with that, but my brain says that the Enterolab results just can't be wrong and I should stay away from the wheat.

Any feedback would so greatly be appreciated.

Laura

celiac3270 Collaborator
celiac3270
Posted

Deleted by poster. See Open Original Shared Link

KaitiUSA Enthusiast
KaitiUSA
Posted

If you were gluten free for 8 months and then only went back on gluten for 4 weeks then a negative biopsy could result in that. They recommend a good 3 months of heavily consuming gluten before testing.

The Enterolab is a good test even though it is not widely accepted by the medical community. I have heard nothing but great things about it and they are on to something big. Also 98% of celiacs have the DQ2 or DQ8 gene....you have the DQ8 gene.

Before you had blood tests the first time were you gluten free? When they did the colonoscopy what did they conclude?

Did you notice a big difference after going gluten free? It sounds like you definitely have a problem with gluten.

darlindeb25 Collaborator
darlindeb25
Posted

Laura--yes, you could be gluten intolerant and are on the way to full blown celiacs--Dr. Green says that if you do have the DQ 8 gene, then chances are good you could be celiac--at any rate--if you feel better gluten-free then go gluten-free--dont let any doctor change your mind about it--i feel you are a celiac and they just have not found the spot that shows them--its your body, your health--take care of it--its the only one you will ever have---Deb

lyoung2 Rookie
lyoung2
Posted
  • Author

Thank you Kaiti for your reply.

The initial blood work and colonoscopy from the first Dr. was NOT gluten-free. When I did Kimball and Enterolab, I had only been gluten-free for 1.5 months.

I definately did feel better gluten-free, but not 100% which was why Dr. #2 wanted the endoscopy. I told him all of my concerns about not having enough damage or sporadic and he assured me he would do multiple biopsies.

I guess there could have been cross contamintation issues as DH is not gluten-free. I will go back to gluten-free and try to be more careful and see if I can't get to being 100% better. I had been sick for so many years, I was looking for a conclusive answer, but I don't think I'm going to get one :(

Thanks again,

Laura

KaitiUSA Enthusiast
KaitiUSA
Posted

It's good you were feeling better though. At least you know there is a gluten issue.

When you went gluten free were you 100% gluten free? Like did you check lipsticks (alot have wheat starch) and other products that you put on your hands, face, and head which can easily get into your mouth.

Is there a reason why you need an official diagnosis. The only way to go for that is go on gluten for 3 months but if that causes problems is that worth it? Especially when you have positive Enterolab and a main gene.

If you need any help with anything let me know :D

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

Celiac.com Sponsor (A8-M):


Guest nini
Guest nini
Posted

I agree with Kaiti, if you know that your body reacts badly to gluten, and is better without, then why put yourself through any more frustration and pain with further testing. You DO show markers for celiac, you just may not have sustained large amounts of damage yet. IMHO gluten intolerance is GLUTEN INTOLERANCE and you know your body better than any dr. Especially since most of the Dr's out there are operating under outdated information and with labs that don't know how to read the test results.

I'm so glad my Dr. recognized all of my symptoms as Celiac BEFORE he did test one. He saved me so much unnecessary suffering and pain and got me onto the road to recovery so much quicker. When I went to him for my yearly follow ups the first year gluten-free and then the second year gluten-free, he was so pleased with my recovery and I'm so pleased too!

christicrete Rookie
christicrete
Posted

I, like you, have a nin-com-poop for a doctor. YOU and only YOU know your body and what you need for it. If you can shop for another doctor do it, if you can't, go to your appointment and leave knowing you know more than someone who spent way too much money on their college education! If it makes you feel better, treat yourself as if you a celiac, diagnosis or not (thats what I do :D ). I am finally starting to feel better now that I don't live and breathe what the doc says. That doc does not have to live with your body, you do, so you do what you need to to be healthy!

Christi

christicrete Rookie
christicrete
Posted

oh and Laura,

If you are like me and think you need an official diagnosis to prove you are not insane and this is all in your head, here is your official diagnosis.

positive celiac disease!!!!

ok, so it may be your favorite music celiac disease, celiac's disease, or Christi's dementia,

You decide ;)

Christi

GFManiac Rookie
GFManiac
Posted

I have a friend that is allergic to wheat (shows up on allergy tests), but negative blood tests for celiac. Has a physical reaction to wheat without the villi damage...

celiac3270 Collaborator
celiac3270
Posted

Sorry, everyone, this post will look a little weird. There were two posts made and I said DUPLICATE under one, but posted right before Deb did, so she hadn't seen the notice. Then someone else posted under Deb, etc. Meanwhile the other topic also developed. So I just merged them--hence, the two first posts say the same thing.

lyoung2 Rookie
lyoung2
Posted
  • Author

Thank you all so much for your responses. I'm so tired of going around in circles, and you have helped me out with your words of wisdom.

Kaiti, I know you asked why I was looking for an official diagnosis, and I guess my answer to that is because both Dr's were trying to tell me that it must be something else because the diet was not working 100%, only about 80%. And because some of my b/w was border line, I was starting to believe them.

So, I am going to go back on the diet and be way more careful with not just food, but also the beauty products, as well as taking the dairy out which Enterolab says I have an issue with too. I am going to ignore the dr's for now and see how things go for a few weeks.

Thanks again for all your support.

Laura

Archived

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

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


  • Member Statistics

    • Total Members
      131,191
    • Most Online (within 30 mins)
      7,748
    teresa1955
    Newest Member
    teresa1955
    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...