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

No Prior Symptoms -- Intense Dehydration?

newbaker

Recommended Posts

newbaker Newbie
newbaker
Posted

I got a diagnosis of celiac disease a few weeks ago. I keep seeing people say that they had GI symptoms for a long time before they were diagnosed, but I didn't have much warning. I'm wondering if anybody has had a similar experience. I'm a bit surprised at the diagnosis, but am trying to follow the gluten-free diet which has been helping so far (about two weeks now). I'm also hoping people with more experience might offer me answers.

My biggest question is about celiac disease coming on very quickly. Until a few months ago I wouldn't have said I had any GI issues unless it was correlated to a large meal at an iffy place. It took days to go from no problems to severe dehydration for no reason I can find -- ended up in the ER with an IV although I'd been drinking 16+ big glasses of water every day that week. Even with the IV fluids, and with eating more than usual that week, I'd had lost over 15% of my body weight within 3 days. I think a lot of how ill I've been since then was made worse by that episode, so I'm worried that something this bad will happen again -- so I'm wondering if anybody has had similar experiences and what's happened since then? How long has it generally taken people not to need to be too worried about dehydration?

Since some of the blood tests were done while I was in hospital, I'm not sure yet which ones were showing things that led them to believe it was celiac disease. I know that a bunch of blood tests were done, and an MRI showed something about not absorbing water, but I see a lot of people here mention that doing an endoscopy is necessary. Since I've already stopped eating gluten will doing one now give any more information than the blood tests and MRI? Has anybody found benefits down the road to having done an endoscopy?

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

Celiac.com Sponsor (A8-M):


Takala Enthusiast
Takala
Posted

If you were already diagnosed, you don't really need an endoscopy (which looks at your small intestine for damage to the lining of it) unless your doctor recommends it to aid in further diagnosis of what could be additional issues.

The majority of people with celiac disease are still undiagnosed because of the prevalent myth that one must have G.I. issues and weight loss and wasting as the primary symptoms, when in reality celiac can cause many different symptoms and auto immune problems, even weight gain because of thyroid problems, and severe weight loss is more likely the acute end phase. In our society, with our eating habits frequently causing "heartburn" it is considered almost normal to be having to use an acid blocker after a heavy meal, or gobble down "Tums," but doctors do not realize that a lot of heartburn could be a sign of celiac and celiac caused acid reflux disease.

Testing is best done while still eating gluten. In your situation, continuing to eat gluten might be so dangerous, that the doctors thought that what tests they have done are sufficient, especially if you are already responding to a gluten free diet.

As long as you continue to eat gluten free, drink enough water, and eat carefully, you should be okay with the dehydration. I have to be careful with it, but it is not because I am having any GI issues, but because I live in a part of the country where a high of 90

1desperateladysaved Proficient
1desperateladysaved
Posted

Extreme thirst is a symptom which I have had. I think it is related to Celiac. I now think that I am dehydrating during attacks. Symptoms have included bright yellow to nearly orange urine, and dry mouth. I also don't sweat or have tears at the worst of these times. :(

I was recently cautioned by my doctors to stay out of the hot sun. I was swollen and had a rash. They didn't exactly explain to me why.

I think I have been reading that the small intestine has difficulty absorbing water. That being the case I am not sure if drinking more will solve the problem.

I hope you will heal up enough to maintain your fluid level the normal way.

DT

Archived

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

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


  • Member Statistics

    • Total Members
      131,190
    • Most Online (within 30 mins)
      7,748
    Jlp523
    Newest Member
    Jlp523
    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...