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

At A Loss

silvervelvet

Recommended Posts

silvervelvet Newbie
silvervelvet
Posted

I went on base to the flight surgeon. It's a different doc every time. I hadnt seen this one before. He was very thorough and mentioned Celiac Disease after reviewing my entire file and spending 45 minutes with me when his nurse clearly said 15 min. tops was all he could give.

So, after reviewing a sonagram from another hospital, he decided to request additional testing after identifying biliary sludge. Sludge is composed of cholesterol and salts which is the components of gallstones. I will have a HIDA test on the 6th.

In addition to this "sludge" my symptoms are: severe bloating (despite being only 98-100 lbs. at 5'1) and gas, nausea, gripping pain in my lower ab. that makes me drop to the floor, constipation, chest pains, cloudy thinking ( I was diagnosed with ADHD 3 yrs. ago at the age of 25), irritability, anemia, fatigue, arthritis w/ itchy, burning red bumps on the joints of my fingers and toes, and allergies. The "arthritis" comes along if I eat at the cafeteria (at school where I teach) for 2 or more days in a row. The food is very carb heavy. For instance my fave thing to eat is the chicken sandwich. The chicken is breaded served on bread of course. I could give it up no problem. Its not all that good really, but more tolerable than their other menu items.

Also, in 2001, I was diagnosed with IBS by my family doctor (civilian doctor). No tests were administered during that 15 min. visit. In 2004 I went to a GI doc and he tested me for parasites and whatever else. He said it was all negative and I had IBS. That was it and I never went back to him.

On my last visit, the Flight Doc also ordered a CA-125 which freaked me out! I just couldnt believe that he was thinking it could be cancer/leukemia. Turned out negative but he said on a message that it pointed to allergies. I never called him back. I was thinking yesterday that it could be an allergy to gluten which is what we were discussing in the 1st place before he called for these other tests. I put myself on a gluten free diet yesterday after doing some research for the past week and a half. The doc. wasnt in today because they dont work on Fridays.

From what you guys all know, what do you think? Im really sorry to have bored you with my medical history. Despite all of this I am very active and go to the gym a lot. No one knows that I am "sick". My husband just thinks that I am very sensitive because Im so small. He thinks that there isnt anything wrong with me.

I dont know what Im doing and I want to request a blood test. I would like to avoid the biopsy.

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

Celiac.com Sponsor (A8-M):


Ursa Major Collaborator
Ursa Major
Posted

I am sure I am speaking for everybody here, when I say you have NOT bored us with anything you said. It is impossible for anybody to give you any advice or an informed opinion, if we don't know your history.

You sure sound like you could have celiac disease. All your symptoms speak for it. If you are having any tests done, you shouldn't stop eating gluten, though, as it will likely result in false negatives. If you're happy with just a dietary response, go for it. If you want an official diagnosis, you will have to keep eating gluten.

The opinions on this one are divided. I personally think that a dietary response is all that's needed to confirm at least gluten intolerance, if not celiac disease. Others really want to have that 'official' diagnosis from a doctor.

You IBS 'diagnosis' is not to be trusted. An irritable bowel has a cause! It's easier for doctors to just call it IBS, rather than to keep testing and searching until they find a cause. A lot of people with celiac disease were told they have IBS at first.

Smunkeemom Enthusiast
Smunkeemom
Posted

If I were you I would def. get tested, stay on the gluten for now so that the test is accurate. Get your lab results and look at them yourself, make sure you understand what your numbers should be and what they are.

I was sick for years, and nobody ever even mentioned Celiac. I got diagnosed with IBS, ADD, Non-specific sezure disorder, depression, anxiety, arthritis, chronic UTI's, chronic sinus infections, severe anemia and since they couldn't find a cause for any of it they said I had hypochondria. <_< (like that can cause seizures?! :blink: ) Just before my youngest got deathly ill, my doctors were talking about the possibility of Lupus.

When my daughter got diagnosed, the whole family got blood tests. The doctor lied to us about the results, and for 2 years, we thought my daughter's and my blood tests were negative, but they were really positive.

I have since found out that all of my symptoms could have been caused by Celiac, even the little stuff that I didn't mention (like bruising easily, and rapid heart rate) and after 2 weeks on the gluten free diet, I feel a lot better.

sorry if I bored you LOL.

so, in conclusion, Celiac can make you all kinds of weird sick, and you know get tested and get a copy of the lab results. ;)

silvervelvet Newbie
silvervelvet
Posted
  • Author

OH MY GOSH!!! Those symptoms sound just like me with the bruises and everything! that's another reason why the doc thought it was cancer. Why would your dr. lie to you? What benefit would he gain by lying? Im just curious.

Smunkeemom Enthusiast
Smunkeemom
Posted
OH MY GOSH!!! Those symptoms sound just like me with the bruises and everything! that's another reason why the doc thought it was cancer. Why would your dr. lie to you? What benefit would he gain by lying? Im just curious.

she thinks unless you are "really sick" that you shouldn't "have to go on such a restrictive diet", according to her my celiac wasn't "turned on" because I didn't have chronic D (meaning not every single day) and I wasn't losing weight.

My daughter (the youngest) was very very sick, and ended up weighing less than her birthweight at a year old, and eating through a central line directly to her little tummy. When you compare that to me, who felt like crap all the time, but was at least functioning, I guess I didn't look "that sick".

Archived

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

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


  • Member Statistics

    • Total Members
      131,176
    • Most Online (within 30 mins)
      7,748
    Fayeb23
    Newest Member
    Fayeb23
    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

    • 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.
    • Sheila mellors
      Is Toblerone Gluten-Free?

      By Sheila mellors · Posted

      I asked about the new fruit and nut one and the Dietician said yes I could eat it safely. Hooe this helps
    • Heatherisle
      Blood results

      By Heatherisle · Posted

      Daughter has started gluten free diet this week as per gastroenterologists suggestion. However says she feels more tired and like she’s been hit by a train. I suggested it could be the change to gluten free or just stress from the endoscopy last week catching up with her. Just wondering if feeling more tired is a normal reaction at this stage. I suppose it’s possible some gluten might have been present without realising. Have tried to reassure her it’s not going to resolve symptoms overnight
    • DAR girl
      Celiac and allergic to common subs and adds in prepared foods

      By DAR girl · Posted

      Looking for help sourcing gluten-free products that do not contain potato or corn derived ingredients. I have other autoimmune conditions (Psoriatic Arthritis and Sjogrens) so I’m looking for prepared foods as I have fatigue and cannot devote a lot of time to baking my own treats. 
×
×
  • Create New...