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

Inability To Properly Absorb Water?


Woolygimp

Recommended Posts

Woolygimp Contributor

Some of the worst symptoms I have that are related to Celiac are those suggesting minor dehydration. Drinking water does absolutely nothing to alleviate these symptoms, but I've noticed that if I drink Gatorade I feel quite a bit of improvement. Dry skin disappears, i start getting tons of saliva in my mouth, eyes water again, and I don't feel as anxious. Boost of energy as well.

I notice the same improvement, to a lesser extent, when drinking sugar drinks such as fruit juice, orange juice, or soda. Water doesn't seem to help at all - I can drink a ton and still feel thirsty, still feel dehydrated.

Gatorade and sugar drinks definitely help me, and make me feel rehydrated but they aren't exactly healthy as a primary beverage. I'm guessing that maybe my intestines are damaged and have a difficult time absorbing water, and that the glucose/sodium in the drinks aid in the absorption of liquids? I'd also like to note that I eat a healthy amount of salt.

I don't know, but I'm lost. Found a few articles relating to inability of celiacs to properly absorb enough water, but nothing as to how to alleviate it or resolve symptoms.


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



Celiac.com Sponsor (A8-M):



RiceGuy Collaborator

I also drink a lot of water, which is all I drink except for orange juice to cover the taste of some supplements. I figure the thirst is related to an electrolyte imbalance. Salt helps somewhat, though not enough. I've read magnesium helps boost absorption, and taking this does help, though again it's not a total fix.

Slowly, it seems the thirst is lessening, and I can tell that absorption is returning at the same time. So I think it's just gonna take a long time. But as I read about things which might help, I try them out. I don't doubt there may be more which could be done to aid the healing process.

katifer Apprentice

my nutritionist said that was actually intolerance/allergy to sugar cane. take it or leave it- b/c he isnt a doctor---and is pretty earthy--it has helped alot!``

ShayFL Enthusiast

I would add a pinch of salt to your water, a few drops of trace minerals as well. This should help.

Woolygimp Contributor
I would add a pinch of salt to your water, a few drops of trace minerals as well. This should help.

It's not just the salt though. Glucose is actually the more important ingredient because it helps the osmosis and absorption inside the intestines.

It's the reason that soda and other high sugar drinks are advocated as much better alternatives to water when given to sick individuals who are vomiting/diarrhea due to an acute illness.

Jestgar Rising Star
It's not just the salt though. Glucose is actually the more important ingredient because it helps the osmosis and absorption inside the intestines.

It's the reason that soda and other high sugar drinks are advocated as much better alternatives to water when given to sick individuals who are vomiting/diarrhea due to an acute illness.

Actually your intestinal cells have both sodium and sugar pumps. You need both.

I'm pretty sure that water is hard for everyone to absorb, maybe it's that much harder for you. Stop drinking water, switch to soups or something.

YoloGx Rookie

Besides using electrolytes and fruit juice etc. I suggest you all consider using slippery elm and/or marshmallow root caps to help heal and soothe and rehydrate your intestines and thus your whole body. If your villi are in really bad shape also consider using bromelain/papain caps between meals as a fibronylitic agent (i.e., reduces swelling and heals scar tissue).

When the intestines are healed enough, consider also using fresh ground flax seed (1 tablespoon before grinding them in your clean coffee grinder mixed with 1/4 tsp. apple pectin) mixed in water, chased with water or with your juice. It should help immensely with your general feeling of hydration and as a bulking agent as well as giving you omega 3's.

I am actually a little jealous since I can't handle eating much fruit at all let alone fruit juice or sugar due to candida overgrowth! Am glad it works for you.

Bea


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



Celiac.com Sponsor (A8-M):



Jestgar Rising Star

And listen to Yolo. She seems pretty sharp.

sickchick Community Regular

Yolo gives THE BEST advice... without a doubt ;)

I think Seltzer Water has a little bit of sodium, I drank it when I got the flu last week. :P

lovelove

ShayFL Enthusiast

Coconut water is supposed to be EXCELLENT for dehydration and easily absorbable.

AndrewNYC Explorer

Try Gatorage G2 or Pedialyte over regular gatorade.

dbmamaz Explorer

I drank gatoraide for years when I got that really bad thirsty feeling. I discovered it fairly late in life, and was just thrilled how much it helped. When i met my 2nd husband, he was kinda thrilled becuase he'd never met a woman who drank it :P

I was also noticing that i'd gone thru this summer and only wanted gatoraide one or two times and was really wondering why - i guess its that i'm healthier . .. so hopefully it will improve for you (I've been gluten-free since november 07)

YoloGx Rookie
Yolo gives THE BEST advice... without a doubt ;)

lovelove

Thanks you guys! I really do need to write that book.

Bea

GlutenWrangler Contributor

I have the same exact problem that you're having. It's frustrating. I definitely think it has a lot to do with the Glucose aiding in absorption, along with the added electrolytes. It hasn't really improved for me at all in the past two years. Hopefully you'll have better luck than me. Take care,

-Brian

powerbraid Rookie
Some of the worst symptoms I have that are related to Celiac are those suggesting minor dehydration. Drinking water does absolutely nothing to alleviate these symptoms, but I've noticed that if I drink Gatorade I feel quite a bit of improvement. Dry skin disappears, i start getting tons of saliva in my mouth, eyes water again, and I don't feel as anxious. Boost of energy as well.

I notice the same improvement, to a lesser extent, when drinking sugar drinks such as fruit juice, orange juice, or soda. Water doesn't seem to help at all - I can drink a ton and still feel thirsty, still feel dehydrated.

Gatorade and sugar drinks definitely help me, and make me feel rehydrated but they aren't exactly healthy as a primary beverage. I'm guessing that maybe my intestines are damaged and have a difficult time absorbing water, and that the glucose/sodium in the drinks aid in the absorption of liquids? I'd also like to note that I eat a healthy amount of salt.

I don't know, but I'm lost. Found a few articles relating to inability of celiacs to properly absorb enough water, but nothing as to how to alleviate it or resolve symptoms.

I'm not sure if I have the same problem, but I too am ALWAYS thirsty. Then, I discovered Coconut Water. It really seems to help. I use O.N.E. and Amy & Brian's Coconut Water, and they are both gluten-free! ;)

Woolygimp Contributor

I'd just like to note that I can drink Gatorade/Powerade and feel total improvement. I'm just concerned over the fact that making a sports drink my primary beverage can not be too healthy, then of course maybe I'm better off with the extra sugar/calories instead of being constantly dehydrated because that can't be too healthy either.

Gonna give coconut water a shot if I can find some in town.

RiceGuy Collaborator

I just looked up the ingredients for Gatorade, and it looks like mostly sodium and potassium for the nutrients. There is citric acid too, which does enhance absorption. I don't know if the sugar has anything to do with quenching thirst, but I don't eat sugar anyway. I think what I might try is some salt, potassium, citric acid, and a little Stevia for sweetener. The taste will be somewhat lemony. Some berries would probably make it taste better.

I'll post the results once I see what it does. if anything.

Woolygimp Contributor

Well what I've read after doing quite a bit of research is that the sugar and glucose is absolutely essential and is probably the main reason that I'm able to feel such an improvement drinking it.

The salt speeds up the absorption of the sugar, which is the main means of osmosis and allows the liquid to cross the intestinal membrane into the bloodstream.

That's why it's always recommended for someone suffering from dehydration to drink a sugary drink, as anything (including sodas) are better than pure water. Ever been told to drink 7up when sick and vomiting? Water is very inefficient at replacing lost liquids in those suffering from acute dehydration or any sickness where large amounts of fluids are lost fast. Find any dehydration or oral rehydration solution and they are all loaded with sugar, for a reason.

I've tried drinking salt with my water, and it didn't help. Almost positive it's the sugar.

Quoted from wiki:

Sugar is absolutely essential to improve adequate absorption of electrolytes and water, but the presence of sugar in ORS solutions does tend to cause diarrhea to worsen. Although oral rehydration with a sugar solution does not stop diarrhea, and the diarrhea contributes to further loss of fluids, oral rehydration helps replace these fluids. It thus keeps the body hydrated and gives the patient a greatly improved chance of surviving the diarrhea. If a broth can be prepared from simple carbohydrates and substituted for sugar in the solution, diarrhea can sometimes be reduced while oral rehydration remains effective.

Oral rehydration therapy is widely considered to be the best method for combating the dehydration caused by diarrhea and/or vomiting.

Various diseases cause damage to the intestine, allowing water to flow from the blood into the intestine, depleting the body of both fluid and electrolytes. This may be

* a direct destruction of the cells lining the intestine (the enterocytes),

ORT consists of a solution of salts and sugars which is administered orally.

Pretty interesting stuff, basically it says that in cases of damaged intestinal cells sugar is essential.

hangininthere Apprentice

Plain water doesn't 'soak in' with me either, leaves me feeling just as dehydrated.

But when I add a splash of bottled concentrated lemon juice to my glass of water, it soaks in and I feel hydrated.

You could try this.

Just add a splash of bottled concentrated lemon juice to your glass of water.

Of course fresh lemon would be better, as the bottled juice has a preservative in it. But I can't get to store for fresh lemons on a regular basis, so I use the bottled concentrate.

Best wishes to all,

Patti

RiceGuy Collaborator

That's interesting stuff - about the sugar. I don't eat any sugar accept for what's in fruit and such, so I wonder. Perhaps I'll try adding salt, potassium, and citric acid to some fruit juice.

veggienft Rookie

Yolo, hangininthere, jestgar and rice guy all have it nailed. It's the potassium.

Like other celiacs here, I'm on a no-sugar, almost-no-fruit candida diet. I can't tolerate high sugar, or high salicilate fruits like blueberries, bananas and oranges. That makes it VERY difficult to get potassium. I exist on that fine line which you encounter occasionally.

I seem to tolerate lime juice well, and lemon juice okay. So every day I squeeze half of one of them in a glass of water, and that fixes the tired-and-dry symptoms I share with you.

People can, not just survive, but flourish on a blood sugar level near ZERO. It's called ketosis. We do not need sugar ....at all. And we need very little starch. But we require meat and fat.

..

neesee Apprentice
Yolo, hangininthere, jestgar and rice guy all have it nailed. It's the potassium.

Like other celiacs here, I'm on a no-sugar, almost-no-fruit candida diet. I can't tolerate high sugar, or high salicilate fruits like blueberries, bananas and oranges. That makes it VERY difficult to get potassium. I exist on that fine line which you encounter occasionally.

I seem to tolerate lime juice well, and lemon juice okay. So every day I squeeze half of one of them in a glass of water, and that fixes the tired-and-dry symptoms I share with you.

People can, not just survive, but flourish on a blood sugar level near ZERO. It's called ketosis. We do not need sugar ....at all. And we need very little starch. But we require meat and fat.

..

Actually.....a blood sugar of nearly zero can and will kill you if you don't get it up to a normal level quickly! Your brain needs glucose and oxygen in order to function.

neesee

veggienft Rookie
Actually.....a blood sugar of nearly zero can and will kill you if you don't get it up to a normal level quickly! Your brain needs glucose and oxygen in order to function.

neesee

You have a common misconception.

Open Original Shared Link

Low-Carbohydrate Diet

----------------------------------------------------------------

........Ketosis is a normal physiologic state caused by very normal and healthy body functions contrary to the myths, distortions and lies published by the vegetarians and other high-carbohydrate diet supporters. Ketosis allows the body to function efficiently and live off fat when necessary. Ketones are not a poison, which is how most medical and nutritional experts often refer to them. Ketones make the body run more efficiently and provide a backup fuel source for the brain. The three substances known as ketone bodies are acetoacetic acid, beta-hydroxybutyric acid and acetone. Some unknowledgeable people have an absolute fit when they are told that ketosis produces acetones in the blood, since acetone is a common household solvent. These ketone bodies are the preferred fuel of the heart, the outer part of the kidneys and can be used by most areas of the brain.

........Many people falsely believe they cannot or are not losing weight because the ketones drop to a lower level. The Ketostiks, used to measure the ketones in the urine, are no longer showing the purple color on the test strip. However, weight loss continues with or without the ketones being present. The spillage of excess ketones in the urine disappears on the low-carbohydrate diet after the body becomes accustomed to using dietary fats for energy instead of glucose. This usually occurs within a few weeks on the diet. People who normally eat high-carbohydrate meals have been fueling their bodies from the glucose and fructose obtained from the carbohydrates. Their cells have had very little experience burning fatty acids for energy. The body uses the glucose first to prevent high levels of glucose in the blood.

The body experiences a new condition when a person goes on the low-carbohydrate diet. The more commonly used glucose fuel is no longer available. The body reacts by dropping the pancreas' production of insulin and increasing the hormone glucagon. The glucagon draws stored fat reserves in the form of triglycerides for use by the cells as the new energy source. However, the cells are slow to react to this new fuel source, and the individual feels weakness or a lack of energy. The resistance to burn fatty acids for energy can vary greatly between individuals. Some people feel this weakness, but others pick right up and take off with the feeling of greater energy than before.

The liver begins to catabolize (break down) the extra fatty acids which are not being utilized by the cells. However, the liver does not have the enzyme necessary for complete catabolism of the fatty acids. This causes the discharge of the ketone molecules into the blood. The strange taste in the mouth and mild breath odor shows the presence of these ketones. Other body cells can utilize the ketones for energy. The brain can also utilize ketones contrary to the myth that the brain must be powered by glucose only; although, some areas of the brain still require glucose, which the body makes from amino acids or fats.

The body begins to utilize the fatty acids for energy more efficiently after a few weeks and the ketone level drops to normal. This does not mean one is not losing weight. It means the body is becoming a more efficient fat burner.

The scientific and practical amount of carbohydrate needed in the diet is ZERO, NONE. Carbohydrate is not a requirement for any body function. In fact, it appears that the lower the carbohydrate level in the diet the better the long-term health. Age-related degenerative diseases are caused by high-levels of carbohydrates in the diet. One can be on a very low or zero-carbohydrate diet indefinitely as has been shown by the study of many primitive societies.....

----------------------------------------------------------------

The rest of the article is excellent. A low- or no-carbohydrate diet is not just ........not harmful, it guards against the very autoimmune diseases and cancers which are the subjects of this discussion board.

Open Original Shared Link

One of the main benefits of exercise is that it forces local muscle and fat tissues into ketosis. Exercise burns energy faster than blood sugar can supply it, so muscles consume adjacent stored fat instead. In my opinion, this is why the people, like the title poster, who react with discomfort to low blood sugar levels, usually avoid strenuous exercise. However, the discomfort doesn't relieve people of the necessity to exercise.

Humans have only consumed agrarian carbohydrates in the last 10,000 years of our evolution. Survival of the fittest dictates that major evolutionary changes can only occur when environmental hardships reduce a species down to a breeding pair. A genetic mutation allows that pair to propagate the species with changed attributes. Agrarian grains expand human populations, meaning that humans have no ability to genetically adapt to grains and sugars.

We have developed epigenitic abilities to adapt, but as shown in this forum, epigenetic adaptations are fleeting. We are predators with only temporary ability to survive on grains and sugars.

..

Woolygimp Contributor
Yolo, hangininthere, jestgar and rice guy all have it nailed. It's the potassium.

Like other celiacs here, I'm on a no-sugar, almost-no-fruit candida diet. I can't tolerate high sugar, or high salicilate fruits like blueberries, bananas and oranges. That makes it VERY difficult to get potassium. I exist on that fine line which you encounter occasionally.

I seem to tolerate lime juice well, and lemon juice okay. So every day I squeeze half of one of them in a glass of water, and that fixes the tired-and-dry symptoms I share with you.

People can, not just survive, but flourish on a blood sugar level near ZERO. It's called ketosis. We do not need sugar ....at all. And we need very little starch. But we require meat and fat.

..

Uhh, I'm sure I get tons of potassium as I eat tons of spinach, broccoli, meat, fruit, and lettuce as pretty much my entire diet consists of that stuff.

Doesn't seem to help, but something in gatorade is definitely doing the trick. The only thing I can think of is the combination of sugar/salt, because there's no way I'm not getting enough potassium.

Woolygimp Contributor
Uhh, I'm sure I get tons of potassium as I eat tons of spinach, broccoli, meat, fruit, and lettuce as pretty much my entire diet consists of that stuff.

Doesn't seem to help, but something in gatorade is definitely doing the trick. The only thing I can think of is the combination of sugar/salt, because there's no way I'm not getting enough potassium.

Another thing I'd like to add is that orange juice doesn't seem to do the trick either. Supposedly it's crammed with potassium and sugars, but I think that it's maybe missing the salt?

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,298
    • Most Online (within 30 mins)
      7,748

    Ddshirley
    Newest Member
    Ddshirley
    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

    • lmemsm
      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
      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.
    • max it
    • cristiana
      My chest pain has been caused by costochondritis, as well as times when iron supplements has given me such bad bloating it has put pressure on my back and chest, and reflux can do the same. Also, along the lines of Wheatwacked's suggestion above, is it possible you had an injury to your chest/ribs way back that is being set off by either some sort of gastrointestinal bloating/discomfort? I distinctly remember really hurting a rib over forty years ago when I misjudged a wall and thought it was just behind me but in fact it wasn't.  I fell badly against the wall and I think I cracked a rib then.  For some strange reason I didn't tell anyone but I think had I gone to hospital an X-ray would have revealed a fracture. I think that rib has not been right since and I am sure that bloating makes it worse, as well as heavy lifting.
    • Dora77
      Sorry for the long post. I’m 18, and I was diagnosed with celiac disease and type 1 diabetes (T1D). My transglutaminase IgA was >128 U/mL, EMA IgA positive twice, and I’m HLA-DQ2 and DQ8 positive. I’ve been completely asymptomatic since diagnosis, even when I cheated with gluten sometimes in the past and used to eat out(2-5 years ago) I don’t get the typical celiac reactions, which makes it really hard to know when (or if) I’ve been glutened. But for the past year, I’ve been the most strict with my diet, and that’s also when a bunch of new issues started. I eat completely glutenfree, never eat out, dont eat food that says „may contain gluten“.   Current Health Problems • 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). • Chronic back pain started gradually, worsens with movement, lots of cracking/popping sounds. Been ongoing for a year now. First noticed in the gym. • Abdominal bulge on the right side, not painful but seems to be getting slightly bigger. Doctor didn’t find a hernia on ultrasound, but it was done lying down (I’ve read those can miss hernias). Noticed it like 6 months ago, couldve been there longer. • extremely dry and mildly swollen hands (this started before I started excessive hand-washing), and bloated face. • Signs of inattentive ADHD (noticed over the past 3 years), now combined with severe OCD focused on contamination and cross-contact. • Growth/puberty seemed to started after going gluten-free. Before that I was not developing. Dont know if any of these are because of celiac as my dad doesnt have those and he is a lot less strict gluten-free then me. I also had pancreatic elastase tested four times: values were 46 (very low), 236, 158, and 306 (normal). Gastroenterologist said one normal value is enough and I don’t have EPI. Family doctor prescribed Kreon anyway (after I pushed for it), and I just started taking 1 capsule (10,000 units) with meals 2 days ago, but couldn‘t see effects yet because I’ve been constipated the last few days. Maybe because of thyroid. I don’t have Hashimoto’s. No thyroid antibodies. But I took levothyroxine for slightly low FT4 levels. My thyroid levels fluctuated between borderline low and low-normal. And recently lowered my dose so that may have caused the constipating. I probably didn’t need it in the first place, and am thinking about stopping it soon.   Current Diet Right now, I only eat a very limited set of “safe” foods I prepare myself: • Gluten-free bread with tuna or cheese • Milk and cornflakes • gluten-free cookies/snacks • Bananas (the only fruit I trust right now) I rarely eat other fruits or vegetables, because I’m scared of contamination. My dad, who also has celiac but doesn’t care about CC, buys fruits, and he might’ve picked them up right after handling gluten bread. That makes me feel unsafe eating them. Even fruit at stores or markets feels risky because so many people with gluten on their hands touch them.   My Home Situation (Shared Kitchen) We’re a family of 5. Only my dad and I have celiac. He eats glutenfree but doesn’t care about CC and sometimes (but rarely) cheats. My mom and siblings eat gluten bread at every meal. My mom is honest (so if i ask her to be cautious, she most likely would try to), but doesn’t seem to understand how serious celiac is. She: • Stopped using gluten flour • only cooks gluten-free meals (but they still heat up gluten bread and also cook gluten noodles) • Keeps separate butter/jam/jars for me • Bought me a stainless steel pan Bu we didn’t replace old wooden utensils, cutting boards, or other pans. The new they bought me pan was even carried home in a shopping bag with gluten bread in it, which triggered my OCD. It also has a rubber handle and I’m scared it might still hold onto gluten. Even if it’s washed well, it’s stored next to other pans that were used for gluten food/bread. Our kitchen table is used for eating gluten bread daily. My mom wipes it but not with soap. I’m scared tiny particles remain. If she made gluten-free bread dough on a board at the table, I’d still worry about cross contmaination contamination even with something under the dough and on the table as at one point the dough would probably touch the table. So I stopped eating anything she makes.   I know OCD is making it worse, but I can’t tell how much of my fear is real and how much is anxiety. Examples: • I wash my hands 20–30 times a day — before eating, after touching anything at home or outside, after using my phone/laptop. • I don’t let others touch my phone, and I’m scared to use my laptop because friends at school or my brother (who eat gluten) have touched it. And it annoys me a lot when others touch my stuff and feels like it got contaminated and is unsafe instantly. • I stopped eating while using my phone or laptop, afraid of invisible gluten being on them. • I wash my hands after opening food packaging (since it was on store cashier belts where gluten food is placed). • I avoid sitting anywhere except my bed or one clean chair. • I won’t shake hands with anyone or walk past people eating gluten. • At school, when switching classes, I wash my hands before getting out my laptop, again before opening it, etc. • I open door knobs with my elbows instead my hands   Job Concerns (Powder Coating, Sandblasting, Etc.) I’m working a temporary job right now that involves: • Powder coating • Sandblasting • Wet spray painting • Anodizing There’s also a laboratory. I don’t need this job, and my OCD makes me believe that dust or air particles there might contain gluten somehow. Should I quit?   Doctors Haven’t Helped My family doctor told me: “Asymptomatic celiac isn’t serious, if you have no symptoms, your intestines won’t get damaged, so you don’t need a gluten-free diet.” I knew that was wrong, but he wasn’t open to listening. I just nodded and didn‘t argue. My gastroenterologist (who’s also a dietitian) said: „If your antibodies are negative, there’s no damage. It might even be okay to try small amounts of gluten later if antibodies stay negative.“ Also said, pepper that says “may contain gluten” is fine if it only contains pepper. She was more informed than my family doctor but didn’t seem to fully understand celiac either.   Questions I Need Help With 1. Is it realistically safe to eat food my mom cooks, if we get separate pans/ and boards even if gluten is still used in the same kitchen? There will always be low risk of cc chances like that she will still touch stuff that was touched by her and my siblings after they ate gluten. And as there are gluten eaters in the house and she also prepares and eats gluten. So would opening the fridge then getting the food and touching the food be okay? So basically what i am doing, washing my hands multiple times while preparing food, she would only wash it once before, then touch anything else (for example water tap or handles) that were touched with gluteny hands, then also touch the food. I dont know if I ever could feel safe, I could try telling her how important cc really is. And I trust her so she wouldnt lie to me then be careless about cc, but idk how safe it really can be if she and everyone else keeps eating gluten and touching stuff in the house after eating. 2. Do I need to worry about touching doorknobs, fridge handles, light switches, etc. that family members touched after eating gluten? What about public places like bus handles or school desks? Or like if i went to the gym, I would be touching stuff all the time, so there will be small amounts of gluten and those would get transferred on my phone if I touch my phone while in the gym. But I want to knos if it would be enough to do damage. 3. Is an endoscopy (without biopsy) enough to tell if my intestines are healed? I’d pay privately if it could help and if i dont get a refferal. Or do i need a biopsy? 4. Could my job (powder coating, sandblasting, etc.) expose me to gluten or damage my intestines through air/dust? 5. Do I need certified gluten-free toothpaste, hand soap, shampoo, or moisturizer? (For example: Vaseline and Colgate don’t contain gluten ingredients but say they can’t guarantee it’s gluten-free.) 6. Is spices like pepper with “may contain traces of gluten” safe if no gluten ingredients are listed? Or does everything need to be labeled gluten-free?  7. Is continuing to only eat my own food the better choice, or could I eventually go back to eating what my mom cooks if she’s careful? 8. is cutlery from dishwasher safe if there are stains? Stuff like knives is used for cutting gluten bread or fork for noodles etc. I often see stains which i dont know if its gluten or something else but our dish washer doesnt seem to make it completely clean. 9. I wash my hands multiple times while preparing food. Do i need to do the same when touching my phone. Like if i touch the fridge handle, I wash my hands then touch the phone. I dont eat while using my phone but i leave it on my bed and pillow and my face could come in contact with where it was.  10. Do i need to clean my phone or laptop if theyve been used by people who eat gluten? Even if no crumbs fall onto my keybaord, i mean because of invisible gluten on their fingers. 11. Does medication/supplements have to be strictly glutenfree? One company said they couldn‘t guarantee if their probiotics don’t contain traces of gluten.  12. I had bought supplements in the past, some of them say glutenfree and some of them dont(like the brand „NOW“ from iherb). I bought them and used them when i wasnt washing my hands so often, are they still safe? As I touched and opened them after touching door knobs, water taps etc. It was like a year ago when i bought those and even though i was eating gluten-free, I never worried about what i touch etc. I know this post is long. I’m just extremely overwhelmed. I’m trying to protect myself from long-term health damage, but the OCD is destroying my quality of life, and I honestly don’t know what’s a reasonable level of caution anymore. Thanks for reading.
×
×
  • Create New...