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

How Do You Know...


Chase Corin

Recommended Posts

Chase Corin Newbie

My doctor is a bit of a "Bring me absolute proof and I might believe you" type. I have been asking him for years to do a series of broad ranged blood tests to find out what is wrong with me.

I was diagnosed with Crohn's back in 2001, Since then I have had 3 scopes that came back as being clean so I was re-diagnosed with IBS. Since December of 2010 I have been "Flairing" which basically means I have had diarhea for over a solid year. Since Christmas 2011 I have lost a clothing size and have been overly listless and lacked any energy.

I have recently cut out all gluten as recomended by a family friend, It's been only about a week but I am seeing results already. I am overwhelmed by the idea of living gluten free for the rest of my life. I am such a carb junkie and things like cousecouse are staples in my diet. I got some gluten free bread and tried to toast it in the toaster and nothing, it didn't even turn beige, it was the wierdest stuff I have ever eaten.

I had some regular campbell's mushroom soup for dinner tonight and it sent me running for the bathroom. I don't know if I can live in a world without mushroom soup.

How do I convince my doctor I need to be tested for this and what are some of the better gluten free products I should look for?


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



Celiac.com Sponsor (A8-M):



hexon Rookie

My doctor is a bit of a "Bring me absolute proof and I might believe you" type. I have been asking him for years to do a series of broad ranged blood tests to find out what is wrong with me.

I was diagnosed with Crohn's back in 2001, Since then I have had 3 scopes that came back as being clean so I was re-diagnosed with IBS. Since December of 2010 I have been "Flairing" which basically means I have had diarhea for over a solid year. Since Christmas 2011 I have lost a clothing size and have been overly listless and lacked any energy.

I have recently cut out all gluten as recomended by a family friend, It's been only about a week but I am seeing results already. I am overwhelmed by the idea of living gluten free for the rest of my life. I am such a carb junkie and things like cousecouse are staples in my diet. I got some gluten free bread and tried to toast it in the toaster and nothing, it didn't even turn beige, it was the wierdest stuff I have ever eaten.

I had some regular campbell's mushroom soup for dinner tonight and it sent me running for the bathroom. I don't know if I can live in a world without mushroom soup.

How do I convince my doctor I need to be tested for this and what are some of the better gluten free products I should look for?

I actually like some of the gluten-free breads better than their gluten counterparts. Try glutino or Udi's bread. Keep them in the freezer and toast them to thaw them out. I'll go ahead and tell you now that you may just want to microwave it or toast it in a skillet since your toaster likely is going to cross contaminate any gluten-free stuff you put into it. Progresso has a cream of mushroom soup that doesn't have any gluten in the ingredients.

I can totally relate with the chronic D. I gave up gluten mid November of last year and finally saw some relief from the cramping and D (until recently, where I seem to react to anything). I'll go ahead and tell you though that once you cut out gluten it makes testing for celiac/gluten intolerance very difficult if you want a formal diagnosis. I got a negative celiac blood test anyways, which is pretty common, and I don't particularly care which term defines my issues. I just know it's worked pretty well so far.

mushroom Proficient

Yes, as the pp says, if you want a celiac diagnosis you have to continue to eat gluten up until the time of testing. If you resume eating gluten now, one week would not make any difference; two weeks and the results would not be necessarily valid. So get back on the gluten and tell your doctor that you NEED to be tested for celiac now because you are going to quit eating gluten because you can't stand it any more. Tell him about yuur recent weight loss and your year of diarrhea. Have you ever had the celiac blood tests or just the endos? These are the blood tests you should have:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA

If the blood testing is postive they will probably want to do another endo, for which you should also continue eating gluten.

Incidentally, has anyone ever told you that a gluten free diet is helpful for Crohn's also?

By the way, welcome to the board. Ask any questions that come to mind. :)

AVR1962 Collaborator

My doctor is a bit of a "Bring me absolute proof and I might believe you" type. I have been asking him for years to do a series of broad ranged blood tests to find out what is wrong with me.

I was diagnosed with Crohn's back in 2001, Since then I have had 3 scopes that came back as being clean so I was re-diagnosed with IBS. Since December of 2010 I have been "Flairing" which basically means I have had diarhea for over a solid year. Since Christmas 2011 I have lost a clothing size and have been overly listless and lacked any energy.

I have recently cut out all gluten as recomended by a family friend, It's been only about a week but I am seeing results already. I am overwhelmed by the idea of living gluten free for the rest of my life. I am such a carb junkie and things like cousecouse are staples in my diet. I got some gluten free bread and tried to toast it in the toaster and nothing, it didn't even turn beige, it was the wierdest stuff I have ever eaten.

I had some regular campbell's mushroom soup for dinner tonight and it sent me running for the bathroom. I don't know if I can live in a world without mushroom soup.

How do I convince my doctor I need to be tested for this and what are some of the better gluten free products I should look for?

Is there anyway you could see a new doc? Having already been diagnosed with Crohn's it would lead me to think this very possibily could be celiac. Bad thing about testing is it is not accurate and a person who tests with negative lab results could retest a year later with positive results. If you want to persue an actual diagnosis you would have to continue to consume gluten. However, if the diagnosis is not as important you can always try a gluten-free diet and see if there you find any improvement in your health issues.

You would really be surprised how soon you give up the bread cravings once your body is detoxed from glutens. I was also a big carb eater, loved my cinnamon rolls and tortillas. Now, I don't even find gluten-free bread appealing and it is not because of the taste, it's just that I no longer have those cravings. There are so many foods to eat and so many that are much more beneficial for our bodies. Once you rule out gluten, it really is not all that hard to live without. I do know however, what you are saying, I felt the same. I could not imagibne a whole lifetime of eating no glutens but really it is not as hard as I thought it would be.

ravenwoodglass Mentor

You have gotten some great advice alreay. The only thing I want to add is that if your D is waking you up at night be sure to mention that to your doctor. IBS does not wake folks out of sleep according to my GI. If that is happening to you that rules out it being just IBS.

Chase Corin Newbie

You have gotten some great advice alreay. The only thing I want to add is that if your D is waking you up at night be sure to mention that to your doctor. IBS does not wake folks out of sleep according to my GI. If that is happening to you that rules out it being just IBS.

My D does wake me up in the middle of the night so I will definately mention that to my doctor.

Archived

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


  • 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
      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
      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
      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
      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
      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...