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

Does It Sound Like celiac disease?

Julie0513

Recommended Posts

Julie0513 Newbie
Julie0513
Posted

Hi! I am brand new to this forum and was looking for insight from anyone who could help.

I am a 32 year old mother of 3. I started to develop problems in 2004. Without going into too much detail, I am going to try and give you a quick run down of my symptoms.

In 2004, I developed inflammation in my carotid artery which was extremely painful. Went on predisone and it took care of it. Doctor ordered ANA blood test which came back positive (1:640) and sedrate of 44 and suggested I see a Rheumatologist. I blew it off because I felt fine and had no other symptoms.

Starting in December 2005, I developed chronic neck pain which where giving me horrible back of the head headaches. I still have them today...EVERY SINGLE DAY. I can hear my heart beat in my ears. I am extremely fatigued and could literally go to sleep anytime of the day. I started going to a Chiroprator which did not help. Several times a year, I still developed inflammation in my carotid artery.

I started going to a Rheumatologist because I developed severe sun sensitivity as well as Ryanauds. The Rheumy basically told me after several visits that I have markers for an Autoimmune disorder, but not enough to diagnose me. Meanwhile I am still having these headaches everyday which are debilitating.

This year has been the WORST EVER!!! Along with still having every symptom above...I now have chronic constipation and /or diarrea. But I do go to the bathroom 2-3 per week, sometimes with assistance of suppositories. I have lost 20 lbs since July of 2006. I am 5'4" and weigh 90 lbs. My normal weight is 110 lbs. I started to lose some eyesight 3 weeks ago and now have to wear glasses. Also I feel weak,shaky and dizzy. My right arm and leg goes numb often. My family believes that I have anorexia-which is COMPLETELY UNTRUE!!!! I eat anything and everything I want and have never worried about my weight. I went to the doc last week who tested me for anemia and came back positive. I ended up in the hospital all weekend do to chest pressure. Lungs, gallbladder, kidneys and liver were normal after ultrasound, but was having an irregular heartbeat.

I started going to a neurologist. I have had MRI/MRA of brain...normal, MRI of spine and neck...normal.

I am completely DONE! I am so tired of doctors saying "we know something is wrong, and you have markers...but we don't know what it is". I feel like crap everyday and I think my husband thinks I'm a hypochondriac. Nobody understands how I feel and what I have to deal with. I have 3 kids and I feel so guilty because of what is going on and unable to have the energy to do what they want.

Does this sound familiar at all to anyone? Could I possibly have celiac disease and get a test done? I have a doctor appt tomorrow and was wondering if I should bring up getting tested for this. Anyone who could help I would so much appreciate it.

Thank you!

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

Celiac.com Sponsor (A8-M):


tom Contributor
tom
Posted

Sounds like me at one point.

If it IS celiac and u keep eating the same old way, it'll get a *lot* worse.

So find out.

Schedule the biopsy and bloodtest and hopefully the appt isn't too far out, as the doc will insist u don't go gluten-free before the tests.

Others, feeling less need to convince the doc (and health insurance co. etc), go gluten-free as a test. And casein-free(dairy) - do both.

I ended up having to go on a strict anti-candida diet also before I began bouncing out of bed w/ a smile, previously not done since childhood.

Best of luck - these forums are a great place of help & support. :)

CarlaB Enthusiast
CarlaB
Posted

I would get tested while you're still eating gluten. It's a blood test, then a biopsy.

You might also look into Lyme Disease (symptoms are on Open Original Shared Link, testing by Open Original Shared Link).

mftnchn Explorer
mftnchn
Posted

I think Carla meant get tested before going gluten-free. I second that! But if your tests are not positive, still give the diet a try. There are many here who improve on the diet even though they don't test positive.

SunnyDyRain Enthusiast
SunnyDyRain
Posted

If I were you, I'd demand them to test you for Celiac. I had to demand that I get tested. I got a positive blood test, I felt no need to do a biopsy.

I wish you luck and hope you can get some relief.

Julie0513 Newbie
Julie0513
Posted
  • Author
Hi! I am brand new to this forum and was looking for insight from anyone who could help.

I am a 32 year old mother of 3. I started to develop problems in 2004. Without going into too much detail, I am going to try and give you a quick run down of my symptoms.

In 2004, I developed inflammation in my carotid artery which was extremely painful. Went on predisone and it took care of it. Doctor ordered ANA blood test which came back positive (1:640) and sedrate of 44 and suggested I see a Rheumatologist. I blew it off because I felt fine and had no other symptoms.

Starting in December 2005, I developed chronic neck pain which where giving me horrible back of the head headaches. I still have them today...EVERY SINGLE DAY. I can hear my heart beat in my ears. I am extremely fatigued and could literally go to sleep anytime of the day. I started going to a Chiroprator which did not help. Several times a year, I still developed inflammation in my carotid artery.

I started going to a Rheumatologist because I developed severe sun sensitivity as well as Ryanauds. The Rheumy basically told me after several visits that I have markers for an Autoimmune disorder, but not enough to diagnose me. Meanwhile I am still having these headaches everyday which are debilitating.

This year has been the WORST EVER!!! Along with still having every symptom above...I now have chronic constipation and /or diarrea. But I do go to the bathroom 2-3 per week, sometimes with assistance of suppositories. I have lost 20 lbs since July of 2006. I am 5'4" and weigh 90 lbs. My normal weight is 110 lbs. I started to lose some eyesight 3 weeks ago and now have to wear glasses. Also I feel weak,shaky and dizzy. My right arm and leg goes numb often. My family believes that I have anorexia-which is COMPLETELY UNTRUE!!!! I eat anything and everything I want and have never worried about my weight. I went to the doc last week who tested me for anemia and came back positive. I ended up in the hospital all weekend do to chest pressure. Lungs, gallbladder, kidneys and liver were normal after ultrasound, but was having an irregular heartbeat.

I started going to a neurologist. I have had MRI/MRA of brain...normal, MRI of spine and neck...normal.

I am completely DONE! I am so tired of doctors saying "we know something is wrong, and you have markers...but we don't know what it is". I feel like crap everyday and I think my husband thinks I'm a hypochondriac. Nobody understands how I feel and what I have to deal with. I have 3 kids and I feel so guilty because of what is going on and unable to have the energy to do what they want.

Does this sound familiar at all to anyone? Could I possibly have celiac disease and get a test done? I have a doctor appt tomorrow and was wondering if I should bring up getting tested for this. Anyone who could help I would so much appreciate it.

Thank you!

Julie0513 Newbie
Julie0513
Posted
  • Author

Thank you everyone for your reply! I really appreciate it! I am going to the doctor tomorrow, so I will tell him I need to be tested.

Thanks again!

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

Celiac.com Sponsor (A8-M):


Alephus Newbie
Alephus
Posted

Hi, Am New Also and very happy I found this forum.

I was unaware there was a name for my disorder, I have probably 90% of the symptoms described as siliac , I just discovered that today, so does my mother.

I have to read more to see how I change my diet, anyone know doctors in Miami Fla that treat this disease ?.

I read somewhere About Sunkist diet not being gluten-free ?

Let me give you a short story on Diet Sunkist, about a month ago , i started drinking the diet sunkist because it said sugar free, I went into an Insulin resistance mode, no matter how much insulin I pump, my sugar remained way high, while I kept drinking the sunkist.

My doctor was going nuts with my sugar problem and kidneys failing, and me sleeping 18 hours a day.

Then My wife said ,maybe is the sunkist ? I said it is sugar free" Until I read the label that says modified corn starch, well corn starch is one step away from being glucose, how can these manufacturers of sodas get away with stuff like that and call it diet soda ?

It almost killed me ! and I spent thousands of dollars in treatment since i don't have health insurance because am a diabetic.

If you have had similar experience with diet sunkist please write to me.

what kind of bread can one eat with siliac disease ?

Annaem Enthusiast
Annaem
Posted

I also had a high ANA and markers for auto immune disease which they discovered when i was 17 years old. I had some joint pain so i went ot a Rheumatologist. But they were unable to diagnose me with anything. As the years went on, my stomach started to give me some troubles. I found out 3 years ago i have Celiac Disease. My G.I. says that celiacs often have high ANA's but they don't know much more than that. Someone else in my family developed Fiber myalgia which has improved greatly since being on a gluten free diet. She too was diagnosed after soooo many years of joint pains and unusual symptoms with Celiac Disease. Check out ENterolab for gene test. It will give you something to show your dr. at least since they never do the blood test properly. There are 3 blood tests that should be done not just the 2 . This rules out the false negatives etc...

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...