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
      130,304
    • Most Online (within 30 mins)
      7,748
    Jacquie Whitt
    Newest Member
    Jacquie Whitt
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Wheatwacked
      Ocd making gluten fears unmanageable. Need advice

      By Wheatwacked · Posted

      How high is too high?  I take 10,000 IU vitamin D3 every day.  My blood is stable at 80 ng/ml (200 nmol/L).  Even at 10,000 a day it took 8 years to raise it to 80.  Higher levels of 25(OH)D in blood can moderate the autoimmune attack.  Vitamin D Is Not as Toxic as Was Once Thought Lower vitamin D levels have also been associated with increased OCD symptom severity.  This is a most dangerous popular belief. As mentioned you are suffering from vitamin and mineral deficiencies.  Part of the recovery, that is never explained by doctors, is replenishing your deficits.  Celiac Disease is a disease of malabsorption.  The Western diet is a diet of deficiency.  That is why many processed foods are fortified.  Gluten free foods are exempt.   "I’ve been completely asymptomatic since diagnosis."  There are 200 symptoms that can be caused by Celiac Disease and the malabsorbtion it can cause.     • "Floating, undigested stools for over a year now. Dont think its related to celiac as it was like this since im 17 and not 13-16( i got diagnosed at 13). " Many are misdiagnosed as gall bladder disease.  Choline is needed to create the bile salts needed to digest fat.  90% of our population is deficient.  Eggs and beef are the best source.  The RDA (minimum daily allowance is 500 mg to 3500 mg daily.  One egg has 27% DV.  Broccoli, chopped, boiled, drained, ½ cup only has 7%.  Low choline can cause Non Alcoholic Fatty Liver Disease.   Choline and Risk of Neural Tube Defects in a Folate-fortified Population; Could we be overlooking a potential choline crisis in the United Kingdom?;   Choline was formerly called vitamin B4.  I prefer phoshphatidyl choline for supplementation as it is the form we get in food.   • Chronic back pain started gradually, worsens with movement, lots of cracking/popping sounds.  Vitamin D deficiency may be linked to chronic back pain, But I took levothyroxine for slightly low FT4 levels.  I supplement Iodine by taking Liquid Iodine.  50 mcg per drop.  The RDA is 150 mcg to 1000 mcg in the US.  In Japan it is 150 mcg to 3000 mcg.  I take 600 mcg a day. Since 1970 the intake of iodine has decreased in the US by 50%.  Hypothyroidism has increased 50%.  Insufficient iodine leads to the thyroid gland working harder to produce these hormones, and if it cannot keep up, hypothyroidism can develop, according to the Mayo Clinic.   Iodine Insufficiency in America: The Neglected Pandemic.   I see improvement in muscle tone, healing, brain fog since taking the Liquid Iodine.  I could not eat enough seaweed. B1 stops the cramps in my feet B6 speeds up gastric empying and works on my freezing toes at night.  250 mg several times a day sometimes.  Also seems to be helping bowel regularity. 5 mg Lithium Orotate helped me with overthinking.   10,000 IU vitamin D to control autoimmune, mental health. 500 mg Thiamine - neurologic symptoms 500 mg Nicotinic Acid - increase capillary blood flow 500 mg Pantothenic Acid - creates energy from glucose Krebs Cycle 1000 mcg B12 - creates hemoglobin for oxygen transport 500 mg Taurine - essential amino acid, a powerful antioxident that we make indogenously so it is officially labeled "Conditional Essential" as Choline used to be, but not enough when sickness increases inflammation. reduces Reactivite Oxygen Species (ROS are are free radicals.). 840 mg Phosphatidly Choline x 3 - essential for fat digestion, gall bladder, liver, brain fog, cell membranes, prevent congenital spinal defects (along with B6, B12, folate, Taurine. Iodine - muscle tone, testosterone, hyper and hypo thyroid, slow healing.  600 mcg of Liquid Iodine.  Sometimes twice a day, usually added to a drink.
    • Scott Adams
      Finding gluten free ingredients

      By Scott Adams · Posted

      I completely understand the frustration of finding reliable gluten-free ingredients—it's exhausting when trusted products disappear or companies don't respond to safety inquiries. For teff flour in bulk, check out Azure Standard or Bulk Foods; both often carry gluten-free grains in larger quantities and clearly label dedicated facilities. For soy flour, Anthony's Goods tests for gluten and offers bulk options, though always verify their current certifications. For beans, peas, and lentils, Palouse Brand is a great choice—they're GFCO-certified and transparent about their farming practices. As for lentil elbow macaroni, Explore Cuisine offers similar pastas, though cross-contact policies vary. When companies don't respond, I lean on third-party certifications (GFCO, NSF) or stick with brands like Jovial or Edward & Sons that prioritize allergen safety. It's a constant hunt, but hopefully these leads help! Have you tried local co-ops or ethnic markets for teff? Sometimes they stock bulk African or Indian brands with clear labeling.
    • Scott Adams
      beans in dessert recipes

      By Scott Adams · Posted

      Beans in desserts are a fantastic way to add moisture, structure, and protein while keeping recipes gluten-free. Black bean brownies are a classic, but other beans like adzuki and pinto can also work well—adzuki beans are naturally sweet and often used in Asian desserts, making them great for cookies or cakes. Lentils, especially red lentils, blend smoothly into batters and can replace flour in recipes like blondies or muffins. Since you’re allergic to chickpeas, you might try navy beans or cannellini beans for a milder flavor in vanilla-based desserts. For less crumbliness, blending cooked beans into a paste helps bind the dough, and adding a bit of xanthan gum (if tolerated) can improve texture. If you’re experimenting, start with recipes that replace half the flour with bean purée before going fully flourless. Have you tried using aquafaba (bean liquid) as an egg substitute? It works wonders in gluten-free baking too!
    • lmemsm
      Ocd making gluten fears unmanageable. Need advice

      By lmemsm · Posted

      This may make you feel better about cross-contamination: https://nationalceliac.org/celiac-disease-questions/do-i-need-new-designated-pans-plates-and-utensils/ https://theceliacscene.com/rethinking-cross-contamination-no-need-to-be-so-careful/ I use Tom's of Maine or a toothpaste that states it's gluten free.  I have allergic reactions to some toothpastes so some of the toothpastes in health food stores are usually safer for me. They're typically gluten free as well. Spices can contain cross-contamination from gluten.  There are a few lists online of spices that are safe for celiacs.  I also grow my own herbs and use them in place of store bought when I can.  I think Badia lists their spices as gluten free and Spice Lab has some gluten free too. Knitty Kitty has a great point about nutritional deficiencies and B vitamins.  I got a lot of aches and pains when I got off gluten.  I tried to replace wheat with other healthy grains like teff, buckwheat and sorghum.  Limiting one's diet too much and not getting enough vitamins, can make someone feel worse.  A lot of the gluten free foods in the stores are made with lower quality ingredients than the wheat varieties.  I try to replace all my foods with homemade options.  Then I know the quality of the ingredients and which vitamins I may be high or low in.  Probiotics or prebiotics can help with bathroom issues.  Better to get them in foods if possible and not pill form.  My doctors keep recommending magnesium too.  It's not supposed to be taken alone, but they don't seem to care about that.  It's easy for vitamin D to be low too.  That was another thing doctors told me to take.  Unfortunately, they didn't monitor it and it went too high.  Again, better from natural sources like food and sunlight.  However, supplementing can help if you're not getting enough.  Some sources say to take D with K2.  You may want to have iodine levels checked.  If you add iodine, make sure to get sufficient selenium for thyroid.  You can get iodine naturally in most seaweed.  Nori may also be one of the few non-animal sources for B12.  Brazil nuts are a good source of selenium and you only need a few a day to meet RDA.  Some brands of nuts specifically say gluten free.  Unfortunately, there are issues with Brazil nut production and they're much harder to find this year. The more you can vary your diet the better.  One study said aim for at least 30 different foods in a week.  You might want to try kiwi fruit.  There were some studies that said eating kiwi improved mood.  It also has a covering which most people don't eat, so that should protect what's inside from contamination. I've limited my diet quite a bit over the years because of migraines, so I know how uncomfortable it can be finding safe foods.  However, I'm afraid limiting diets like that may actually be causing more harm than good.  It's something I'm trying to work on.  I keep trying to expand the number of foods I eat and my recipe repertoire.  I made a list of brands of foods that I've found that are gluten free so I have a guide when I'm shopping.  
    • knitty kitty
      Ocd making gluten fears unmanageable. Need advice

      By knitty kitty · Posted

      Hello, @Dora77, I agree with you that your doctors aren't very knowledgeable about Celiac Disease.  My doctors didn't recognize nutritional deficiencies either.  I became very deficient in vitamins before I was diagnosed, so having experienced similar, I understand what a difficult time you're having.   Poor absorption of essential nutrients is caused by the damage done to the intestines by Celiac Disease.  The gluten free diet can be low in essential nutrients, so supplementing to boost your absorption is beneficial.  New symptoms can develop or worsen as one becomes more and more deficient.   There's eight essential B vitamins that our bodies cannot make, so they must come from our food and supplements.  These eight B vitamins work together, like instruments in an orchestra.  They need to be supplemented together with essential minerals like magnesium.   Deficiencies in the B vitamins can have overlapping symptoms.  Some symptoms can be traced to specific B vitamins.  OCD can be traced to low Pyridoxine Vitamin B 6.  Yes, I had OCD and washed my hands until my skin cracked and bled.  ADHD symptoms can be traced to low Thiamine Vitamin B 1.  ADHD is something one is born with.  People who are born with ADHD have a metabolic problem with getting sufficient thiamine into their brain cells.  People who develop symptoms of ADHD later in life are more likely to be low in Thiamine.  The same symptoms appear if one is not getting sufficient thiamine from the diet.  Yes, I developed symptoms of ADHD.  These symptoms improved and disappeared after supplementing with Thiamine and the other essential nutrients. I was diagnosed with Type Two Diabetes.  99% of diabetics of both types are deficient in Thiamine because our kidneys don't re-absorb thiamine properly.  Thiamine is needed to make insulin and digestive enzymes in the pancreas.  Poor digestion (floating, undigested stools) can result with insufficient pancreatic enzymes.  The gall bladder (upper right quadrant) needs thiamine to make and release bile which also helps with digestion.  Constipation is also a symptom of Thiamine and magnesium deficiencies.  The thyroid is another organ that uses lots of Thiamine, too.  Low thyroid hormones can be due to insufficient thiamine, selenium, iron, and iodine.  Swelling of hands, face and feet are also symptoms of thiamine insufficiency.   Our bodies use thiamine to make energy so organs and tissues can function.  Thiamine cannot be stored longer than three weeks.  If our stores are not replenished every day, we can run out of Thiamine quickly.  If we do get some thiamine from our diet, symptoms can wax and wane mysteriously, because a twenty percent increase in dietary thiamine causes an eighty percent improvement in brain function and symptoms.  Thiamine interacts with all the other vitamins in some way.  Many other vitamins and their metabolic processes won't work without thiamine.  In Celiac Disease you are apt to be low in all the essential nutrients, not just thiamine, but thiamine deficiency symptoms may appear first. Talk to your dietician about eating a nutritionally dense gluten free diet.  Keep in mind that processed gluten free foods do not contain sufficient vitamins to be useful.  Processed gluten free foods are filled with saturated fats and excess fiber (that could explain your constipation).  Dairy products, milk and cheese can cause problems because Casein, the protein in dairy, causes the same autoimmune reaction that gluten does in some.  Your current restricted diet is dangerous to your health.  I followed the Autoimmune Protocol Diet (Dr. Sarah Ballantyne).  It's a Paleo diet that promotes intestinal healing.   Discuss with your doctors about correcting nutritional deficiencies as soon as possible.   Interesting reading... https://pubmed.ncbi.nlm.nih.gov/34165060/ https://pubmed.ncbi.nlm.nih.gov/21816221/#:~:text=Lipid-soluble thiamin precursors can,and attention deficit%2Fhyperactivity disorder.
×
×
  • Create New...