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

Questions

karebear74

Recommended Posts

karebear74 Newbie
karebear74
Posted

I have been having symptoms for a long time, I just didn't connect it to celiac because my symptoms didn't seem "typical". I was having a discussion with a friend of mine, who does have celiac, and she mentioned that it sounded like that was what I had, too. So, long story short, I went to my primary doctor and told her about some of what was going on. She said that she didn't think it was celiac, but instead probably IBS, but would send me for a consult with a GI doc to rule out other potential causes for my symptoms (bloating, horrible-smelling gas, bloating, etc.) So, last week I went to see the GI. The first thing he asked me was if my primary ran blood tests for celiac, which she did not. She did, however, draw normal labs - CBC, chemistry, blood glucose, cholesterol, etc. All of my other labs were normal... but the GI has scheduled me to have an endoscopy to test for (1) celiac and (2) H. pylori. After doing lots of reading, I am almost positive that I have celiac... my "non-typical" symptoms now seem pretty typical for celiac. I even have the restless leg, brain fog, allergy symptoms, irritability, and some other stuff that I never would have associated with the disease.

So, I have lots of questions and I'm pretty anxious to get this done and get a definitive diagnosis. I'm actually more worried at this point that they'll say I'm negative and then I'll have to go through something else to try to figure out what's going on. I've had the symptoms for longer than I can remember and I've just been dealing with it because I just didn't think that there was anything that could be done. Anyway, can you tell me...Is it normal for the rest of your lab work to come back normal? How soon after diagnosis and changing your diet did it take you to really start to feel better? How long did it take to get results back? Any advice is appreciated!!! Thanks

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

Celiac.com Sponsor (A8-M):


lizard00 Enthusiast
lizard00
Posted

Hi there. Welcome :)

My labwork was all normal. In fact, my blood tests were negative for celiac, but that's another story. I think that my vitamin D level was slightly low when they finally tested it, but that was about a year later and I had already started taking supplements.

As far as the diet change, I noticed an immediate difference. I mean, I didn't feel great right away, but I used to get almost debilitating headaches nearly everyday. When I went gluten-free, they went away almost immediately. The nausea and digestive pains were more gradual, as well as the fatigue. By about 6 months, I stopped feeling like I had to nap during the day. So, I mean, overall, it really wasn't that long. But it felt like it while I was going through it.

Hope you can get some answers. :)

mushroom Proficient
mushroom
Posted

It is hard to know what blood tests are covered in the "etc." If she just did the standard blood tests, that would not include nutrient testing, testing for iron/ferritin and lots of other things that gluten intolerants tend to be low in. As a matter of good patient practice, it is a good idea to get copies of all your lab results so you can see what is going on with your health care. I would call you doc's office and ask for copies of these tests (and ask for copies of all tests in future) so you can keep your own medical file and monitor what they are doing. Sometimes results get overlooked or misinterpreted, someone forgets to call you about something and just puts it in the file... it is always good practice to monitor your health care. You have only one body to look after -- they have hundreds :)

AVR1962 Collaborator
AVR1962
Posted

In your reading you may have already learned that you could be tested now, results come back negative, test again in a year and the results could be positive. I don't know why the testing is so inaccurate but it is and even docs will tell you that it is hard to get an accurate test.

My situation got real messed up because of docs not having the proper knowledge for testing. What I can tell you is that if you have decided to follow thru on the testing, stay on gluten until all tests are complete. If you come back with negative labs, yes docs may keep searching as they did with me. However, that doesn't mean you can't go on your own and go off gluten to see if it makes a difference for you. Infact, that is what I suggest. That's how I found out. In only 10 days off gluten I knew it was part of my problem. My system was pretty tore up so I also could not tolerate dairy and a few other things.

It depends how much damage has been done as to how fast you will recover but I think you will start noticing a difference within weeks and then it is a bit aof a slow process as everything has to heal and as you are healing it is very important that your diet is that which will help repair. Certian foods could keep you from getting better, depending what you are having a reaction to.

karebear74 Newbie
karebear74
Posted
  • Author

Thanks for the feedback. My endoscopy is scheduled in another week & a half. I'm more worried that they won't find anything than they will, but I will keep doing what I'm doing right now until I can get my results. After that, we'll figure out what the next steps are and go from there.

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...