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

Guest

Recommended Posts

Guest

Hello,

I was diagnosed on the 18th of February 2021, and I've been on the gluten free diet for almost a week. I'm only 17 and have yet to figure out whether the trigger was the extreme stress of starting uni in COVID times and having no friends with me as well as no job experience, or if I was born with it and it just developed over time. I started experiencing extreme symptoms in the first week of uni, starting on the 2nd of February and thought I had developed extreme anxiety due to stress. My main symptoms are vomiting in the mornings even with no food in my stomach, bad nausea, fatigue, feeling uncomfortably full quickly during meals, no appetite, stomach bloating and muscle pain (primarily in my legs) as well as symptoms of depression and anxiety. I also lost about 3kg in just under two weeks. My mornings are horrible but I tend to get better as the day progresses (even when I was actively eating gluten) and at night I feel almost like my normal self, albeit more anxious and stressed. I've never had any experience with anxiety or depression and I've always been happy-go-lucky. Since it was such a dramatic shift from how I normally am, my mother rushed me to the doctor where I got blood tests, which my body reacts horribly to, as well as a pylori breath test. I have struggled with low blood sugar and pressure all my life and in the months predating my diagnosis I had started having symptoms of what I assumed was lactose intolerance but was never diagnosed. Since being diagnosed with Celiacs I've started having dairy again with only gas and no abdominal cramps (which I used to get). I've always been underweight and small; to put into perspective, I am 152cm tall and used to weigh 43kg, now only barely weighing in at 40. I've always struggled gaining weight and assumed I had a fast metabolism since I lose weight quickly. I've never experienced anything like this month. I was diagnosed with the blood test and have not done a biopsy or endoscopy as I'm deeply afraid of medical procedures, including blood tests and other tests. My sister and my dad are vegan so going for a gluten free household is not an option and I've always struggled with appetite and wanting to eat food, which has increased tenfold despite my body being the hungriest its ever been. I was recently glutened again when I made honeyjoys and accidentally used the butter my mother uses which is contaminated so I'm experiencing more symptoms and some are different, I've been having some memory and focus issues to an extent i've never experienced and my legs are really weak. I decided to join this website because I feel like I'm not handling this well and I have a lot of unanswered questions. Mainly, how do you keep weight on? I'm terrified of losing more weight and I have no idea how to gain and keep my weight healthy. I have more but I'd say that is my biggest one. As this is my first post, I apologise if I've done something wrong or if this is too long. I feel a smidge like I'm drowning and I'd really appreciate any support or advice to keep my head above water. Thank you!


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



Celiac.com Sponsor (A8-M):



trents Grand Master

Welcome to the forum Rachel_17.

1. It can take months to start feeling better after being on a gluten free diet. It can take a couple of years for the lining of the small bowel to completely heal but because of your youth I would expect it not to take that long if you are truly eating gluten free.

2. It is very common for celiacs to experience other food allergies/intolerances that have no gluten. Soy and dairy are the most common non gluten foods that celiacs are allergic/intolerant of but it can be almost anything. So watch out for how other foods affect you. Also, about 10% of celiacs react to oat protein the same way they do to wheat/barley/rye gluten. So I would suggest eliminating dairy, soy and oats from your diet for the time being.

3. As far as gaining weight, focus on foods that are calorie dense. High carbs, high fat. But beware that it is common for celiacs to have trouble with fats. Have you noticed oily stools?

4. Low appetite is sometimes the result of vitamin and mineral deficiencies. I would suggest you start taking an adult strength gluten free multivitamin and a high potency B-complex. Thiamine deficiency has been implicated in low appetite problems I believe. People with celiac disease typically develop vitamin and mineral deficiencies because of the damage to the small bowel lining where most of our nutrition is absorbed.

5. As far as sharing the kitchen with family who are not gluten free, that can really be problematic. Sounds like you need to have a conversation with family and impress upon them that even traces of gluten will make you ill. It might be necessary for you to have your own food items in a separate place, particularly things in jars and things that other people might insert a gluten contaminated spoon or knife into. Or maybe put labels on your food with your name on it and ask that others not use them. Also, it's important to wash cookware and utensils thoroughly.

I wish I could give you a quick fix for all that you are facing right now but I also hope that some of my suggestions might help you take heart.

knitty kitty Grand Master

Rachel,

You have symptoms of thiamine deficiency:

Weight loss, muscle weakness, loss of appetite, nausea, anxiety, altered mental state.

 

Doctors believe thiamine deficiency can not occur outside of alcoholism.  That is not true! 

Thiamine deficiency can occur in malabsorption conditions like Celiac Disease.

Thiamine is used up quickly when under stress, emotional or physical.  Thiamine cannot be stored for long in the body.  You can experience thiamine deficiency in as little as ten days.  

When you switched to gluten free diet, you cut out wheat products which are enriched with vitamins, including thiamine.  Gluten free versions of breads and such are not required to be enriched.

You need thiamine to turn proteins, fat and carbohydrates into energy for your body and organs to function properly.  Without enough thiamine, your body uses stored fat and then starts burning muscle tissue for fuel, hence drastic weight loss.

You would be wise to ask your doctor about this.  High dose Thiamine can be given intravenously in hospital under doctor's care due to refeeding syndrome.   

My doctors didn't believe in thiamine deficiency outside of alcoholism (don't drink), and they said I was a hypochondriac and walked away.  I knew I was not mistaken and started high dose Thiamine with over the counter thiamine supplements, thiamine HCl.  I began feeling better within hours.  

Here's some articles....

"Neurological, Psychiatric, and Biochemical Aspects of Thiamine Deficiency in Children and Adults"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6459027/

See the section on Thiamine deficiency in adults...

And...

"Vitamin B1 Thiamine Deficiency"

https://www.ncbi.nlm.nih.gov/books/NBK537204/

And...

Thiamin

Fact Sheet for Health Professionals

https://ods.od.nih.gov/factsheets/Thiamin-HealthProfessional/

 

I still take thiamine as allithiamine (fat based thiamine that will cross the blood brain barrier) and benfotiamine to help my Type Two Diabetes, which increases my metabolic need for thiamine.

Thiamine needs magnesium to work properly, so magnesium supplementation is a must.  And thiamine needs the other B vitamins, so a good B Complex is a must, too.  

I'm really worried about you.  Once the mental weirdness sets in, the thiamine deficiency is getting severe.  Please seek medical attention.  I hope your doctor is not as closed minded as mine were.  Take those articles with you to show your doctor.

Please keep us posted on your progress.

Knitty Kitty

 

Guest
4 hours ago, trents said:

Welcome to the forum Rachel_17.

1. It can take months to start feeling better after being on a gluten free diet. It can take a couple of years for the lining of the small bowel to completely heal but because of your youth I would expect it not to take that long if you are truly eating gluten free.

2. It is very common for celiacs to experience other food allergies/intolerances that have no gluten. Soy and dairy are the most common non gluten foods that celiacs are allergic/intolerant of but it can be almost anything. So watch out for how other foods affect you. Also, about 10% of celiacs react to oat protein the same way they do to wheat/barley/rye gluten. So I would suggest eliminating dairy, soy and oats from your diet for the time being.

3. As far as gaining weight, focus on foods that are calorie dense. High carbs, high fat. But beware that it is common for celiacs to have trouble with fats. Have you noticed oily stools?

4. Low appetite is sometimes the result of vitamin and mineral deficiencies. I would suggest you start taking an adult strength gluten free multivitamin and a high potency B-complex. Thiamine deficiency has been implicated in low appetite problems I believe. People with celiac disease typically develop vitamin and mineral deficiencies because of the damage to the small bowel lining where most of our nutrition is absorbed.

5. As far as sharing the kitchen with family who are not gluten free, that can really be problematic. Sounds like you need to have a conversation with family and impress upon them that even traces of gluten will make you ill. It might be necessary for you to have your own food items in a separate place, particularly things in jars and things that other people might insert a gluten contaminated spoon or knife into. Or maybe put labels on your food with your name on it and ask that others not use them. Also, it's important to wash cookware and utensils thoroughly.

I wish I could give you a quick fix for all that you are facing right now but I also hope that some of my suggestions might help you take heart.

Thanks for the welcome, just talking about this stuff properly was helpful, thank you for your advice! I feel way better in the afternoons (in which this reply is taking place). And in those few days before being glutened again I had started to feel better and even avoided puking at all on one of those days (yay!). I'm very worried about cross-contamination continuing to damage my gut but I'll try my best to be as free from gluten as possible. About cutting out dairy, soy and oats, I'm very worried about finding things to eat, I am pressed for time because of uni and I'm often very tired after my courses and homework, I'm also a picky eater. I've cut out oats entirely since my diagnosis but dairy and soy are large parts of my diet as they are easy things to eat in order to gain weight. My plan as of now is to cut out gluten and once I've built up my meals and have recipes to fall back on, I'll cut out soy and dairy one at a time to see if I experience any changes. I have no oily stools and I'm pretty regular with bowel movements, even during my bad symptoms that was something I didn't really struggle with. I'm hoping once my gut heals more I'll be able to gain some more weight back, because right now I've been eating big lunches and dinner and am gaining back very small amounts, if any. 

I bought some vitamins today that contain iron, calcium, vitamin D3, potassium iodide, zinc and vitamin B12. The vitamins I have right now are also free of gluten and lactose. Is there anything else you'd recommend? Also, do pill vitamins absorb properly when I'm in this condition?

As for the family kitchen, after my morning funk I went out and bought a storage container to keep my toaster and foods in. I'm going to work toward getting in the habit of wiping down all surfaces with hot soapy water as well. I now have my own butter, Vegemite and other things in jars and various sauces I use in stir fries are now gluten free for the whole family. I'm going to buy a new non-stick pan as well in a specific colour and use that for all my cooking. Would you suggest getting my own cutting board and utensils as well?

Thanks for your suggestions, they're very helpful! I wish there was a quick fix too but this website is full of people saying they feel so much better after the transition! 

 

Guest
4 hours ago, knitty kitty said:

Rachel,

You have symptoms of thiamine deficiency:

Weight loss, muscle weakness, loss of appetite, nausea, anxiety, altered mental state.

 

Doctors believe thiamine deficiency can not occur outside of alcoholism.  That is not true! 

Thiamine deficiency can occur in malabsorption conditions like Celiac Disease.

Thiamine is used up quickly when under stress, emotional or physical.  Thiamine cannot be stored for long in the body.  You can experience thiamine deficiency in as little as ten days.  

When you switched to gluten free diet, you cut out wheat products which are enriched with vitamins, including thiamine.  Gluten free versions of breads and such are not required to be enriched.

You need thiamine to turn proteins, fat and carbohydrates into energy for your body and organs to function properly.  Without enough thiamine, your body uses stored fat and then starts burning muscle tissue for fuel, hence drastic weight loss.

You would be wise to ask your doctor about this.  High dose Thiamine can be given intravenously in hospital under doctor's care due to refeeding syndrome.   

My doctors didn't believe in thiamine deficiency outside of alcoholism (don't drink), and they said I was a hypochondriac and walked away.  I knew I was not mistaken and started high dose Thiamine with over the counter thiamine supplements, thiamine HCl.  I began feeling better within hours.  

Here's some articles....

"Neurological, Psychiatric, and Biochemical Aspects of Thiamine Deficiency in Children and Adults"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6459027/

See the section on Thiamine deficiency in adults...

And...

"Vitamin B1 Thiamine Deficiency"

https://www.ncbi.nlm.nih.gov/books/NBK537204/

And...

Thiamin

Fact Sheet for Health Professionals

https://ods.od.nih.gov/factsheets/Thiamin-HealthProfessional/

 

I still take thiamine as allithiamine (fat based thiamine that will cross the blood brain barrier) and benfotiamine to help my Type Two Diabetes, which increases my metabolic need for thiamine.

Thiamine needs magnesium to work properly, so magnesium supplementation is a must.  And thiamine needs the other B vitamins, so a good B Complex is a must, too.  

I'm really worried about you.  Once the mental weirdness sets in, the thiamine deficiency is getting severe.  Please seek medical attention.  I hope your doctor is not as closed minded as mine were.  Take those articles with you to show your doctor.

Please keep us posted on your progress.

Knitty Kitty

 

I'll be sure to ask my doctor! She thought I might have Coeliacs pretty quickly so she seems pretty on the ball with this stuff. I'll also look into magnesium and I'm going to buy a good B Complex tomorrow as well. Thanks for the suggestion! I never would have thought of that! 

Vitamins seems like the way to go, I'll see when I can get in with my doctor to talk about it. Should also be getting another blood test soon to test my thyroid levels and a bunch of other stuff. Will update when I learn more, thanks for the advice!! :)

trents Grand Master
(edited)

Rachel_17, you are taking some good steps toward healing. A big part of finding healing will be you finding a sense of taking control of the situation and you are now doing that.

We want to emphasize the importance of adding to your vitamins a gluten-free high potency B-complex.

Are you vegetarian or vegan? If not, meats are loaded with a lot of the nutrition you need. And eggs. Eggs are a near perfect food from a nutritional standpoint. No offense intended but you may have to work on the picky eater issue in order to get the calories you need. Oh, and nuts/seeds would be an excellent choice as they are loaded with nutrition and calorie dense.

I definitely would recommend getting your own cutting board. Because of the texture of cutting boards, they can trap glute-containing micro crumbs. 

Edited by trents
Scott Adams Grand Master

Welcome to the forum Rachel!

At this point it would be important for your direct family to also get tested for celiac disease, because ~44% of direct relatives also have it. Your sister for sure, but also your parents (if you have the genetic markers, they could have come from one or both of your parents). You may find out that you won't be alone on this diet in your household, and that alone might make life easier for you. If they don't want to be tested, remind them that most celiacs don't have any obvious symptoms.

This article might be helpful in this regard:

 


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



Celiac.com Sponsor (A8-M):



trents Grand Master

Thanks for bringing that up, Scott. I had intended to mention that to Rachel_17 but it slipped my mind.

Related to that is having Rachel_17 and her family members realize that:

1. Active celiac disease can develop at anytime in life.

2. People with the genetic potential for celiac disease will not necessarily develop celiac disease. It requires some kind of stress trigger (e.g., a viral infection) to move from the latent form to the active form.

3. People with active celiac disease may be largely asymptomatic for many years, e.g. they are "silent" celiacs

4. Even though celiac disease may be "silent," that doesn't mean no damage is occurring to the body.

5. The sooner celiac disease is caught and a gluten-free lifestyle is instituted, the better the chances are for minimal health consequences down the line.

Guest
8 hours ago, trents said:

Rachel_17, you are taking some good steps toward healing. A big part of finding healing will be you finding a sense of taking control of the situation and you are now doing that.

We want to emphasize the importance of adding to your vitamins a gluten-free high potency B-complex.

Are you vegetarian or vegan? If not, meats are loaded with a lot of the nutrition you need. And eggs. Eggs are a near perfect food from a nutritional standpoint. No offense intended but you may have to work on the picky eater issue in order to get the calories you need. Oh, and nuts/seeds would be an excellent choice as they are loaded with nutrition and calorie dense.

I definitely would recommend getting your own cutting board. Because of the texture of cutting boards, they can trap glute-containing micro crumbs. 

I'm now on the lookout for a high potency B-complex now, as well as magnesium and maybe another iron supplement depending on my next blood test results. I'm neither vegetarian nor vegan, me and my mother just moderate our meat intake but I still have a decent amount of beef and chicken, just no pork (except occasional sausages) or lamb. I'm working on having more fish in my diet as well. I will work to include more egg in my diet as well, just preparation is difficult in the mornings when I'm glutened.

My go to cashews and almonds may contain gluten so I'm looking for more now as well. My mum has moved the gluten setup (toaster, bread and flour) away from the kitchen and we are going to buy new tea towels and cutting boards.

I am working on regaining control but Uni is the worst part so far because I have to keep up with my workload and lunch can be hard to do since I throw up in the mornings and some of my workshops are over lunchtime. Do you have any suggestions about how to increase productivity when glutened or will that increase as my body regains its function with vitamins and diet?

Guest
4 hours ago, Scott Adams said:

Welcome to the forum Rachel!

At this point it would be important for your direct family to also get tested for celiac disease, because ~44% of direct relatives also have it. Your sister for sure, but also your parents (if you have the genetic markers, they could have come from one or both of your parents). You may find out that you won't be alone on this diet in your household, and that alone might make life easier for you. If they don't want to be tested, remind them that most celiacs don't have any obvious symptoms.

This article might be helpful in this regard:

 

I will certainly bring it up but considering that two out of four of my family members are vegan, I'm not sure of the results of that. My mum is talking about cutting out some gluten with me but bread is a hug staple in the diet of my father and sister. I'll make sure to ask them to get tested and see how that goes. Thanks for the advice! My dad seems concerned after seeing my symptoms so I think he will be the easiest to convince!

trents Grand Master
(edited)

Being vegan should not affect test results as long as they are consuming gluten daily.

Would it be possible to pack a gluten-free protein bar to take to class with you to get something in your tummy that is portable and doesn't require cooking?

You might makeup some hard boiled eggs and keep them in the frig for mornings when you don't feel up to preparation. They will be automatically be shielded from cross contamination.

It would not surprise me that the morning nausea will improve as your strategies for coping, (vitamins, menu changes, etc.) begin to take hold.

You are doing a great job of taking the bull by the horns as the old saying goes, especially for being only 17. A key for getting a handle on all this is to refuse to see yourself as a victim and taking control of what you can control. Keep the good work up! You have a huge advantage here in that your family sounds like they are cooperative. Sadly, we have forum members with families who are in stark denial about their loved one's celiac disease and are convinced that is is all in their heads, the latest fad illness.

Edited by trents
Wheatwacked Veteran
15 hours ago, Rachel_17 said:

Vitamins seems like the way to go,

Celiac is a disease of malabsorption. There are seven vitamins and minerals that are directly affected by the shriveled villi. Once you start throwing up and and limiting your diet you are at risk for others. Eat lots of fruits and salads and raw vegetables. Potassium is the mineral most needed by our bodies (3510 mg/day according to WHO and 4700 mg/day according to FDA). Deficiency is endemic worldwide, but you must get it in food.  Dr. Joel Fuhrman has an excellent Nutritarian diet. Milk has lots of potassium, magnesium, iodine, vitamin A and others, and calories. Also helps keep you hydrated. Since you tolerate milk, 100% grass-fed full fat has a better lipid profile. I drink at least 2 to 4 glasses a day (640-1280 ml a day). 1100+ mg potassium. For many vitamins the tests do not reflect your intake, so it's best to track how much you actually eat/supplement.

" In adults aged 20 and over, the average daily potassium intake from foods is 3,016 mg for men and 2,320 mg for women."https://ods.od.nih.gov/factsheets/Potassium-HealthProfessional/

Adults (19 to 64 years) need 3,500mg of potassium a day. You should be able to get all the potassium you need from your daily diet".https://www.nhs.uk/conditions/vitamins-and-minerals/others/.

As an infant, my son was put on Nutramigen infant formula for six months. As adults, it is a lot harder. 

  • 3 weeks later...
Graves-Mistakes Newbie

Hi Rachel_17!

I'm currently 22 and have been gluten free since I was 7. Weight used to be something I always struggled with. It would dramatically drop when glutened and for someone who was already small, it was worrying to me. I did notice however that as long as I didn't slip, my weight stayed consistent (the crazy amount of pain and other symptoms helped me stay away from gluten like it was the plague any how.) Now, finally, at 22 I'm seeing some weight gain for the first time in my entire life. It could be me getting older or quarantine, but I find it much more likely that it's my new birth control. I also have crazy period cramps like you wouldn't believe and birth control helps me skip my period all together, but it also has helped me gain weight. I went up a whole pant size and I couldn't tell you the last time it's happened. I'm honestly really pleased, if not for having to buy new pants, that I finally look like a healthy filled in adult (minus the height.) I wouldn't always recommend birth control, everyone's situation is different and you don't know how you'll react to it, but it's some food for thought down the line once you've got your diet and symptoms more under control and to your liking. Perhaps given a year or two, once you've given the lining in your intestines a chance to repair damages, you might see some weight gain just from the change in diet.

There's also a weirdly large amount on gluten in things you wouldn't guess so do be careful! And eating out is always a risk unless they have a dedicated kitchen!

knitty kitty Grand Master

@Graves_Mistakes,

Ouch!  Those crazy cramps are from your thiamine being too low!  

"The Effects of Vitamin B1 on Ameliorating the Premenstrual Syndrome Symptoms"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4825494/

 

Thiamine is needed to turn the food you eat into energy and enzymes!  If you're low in thiamine, your body conserves thiamine by burning fat and muscle in your body instead of from your food.  

Meat and liver are excellent sources of thiamine.  Thiamine supplementation is cheap, effective, and safe even in high doses needed to correct deficiency.  I know.  I was thiamine deficient.  

Have you had your Vitamin D level checked?  Correcting any deficiency and getting your Vitamin D level up to 80 nmols allows Vitamin D to act like a hormone to help regulate your cycle.  

Talk to your doctor about checking for vitamin deficiencies.

Best wishes!

 

Scott Adams Grand Master

@Graves_Mistakes Welcome to the forum, and it's great to hear you're finally gaining weight. Did you have to do anything else besides avoid gluten?

Graves-Mistakes Newbie
1 hour ago, Scott Adams said:

@Graves_Mistakes Welcome to the forum, and it's great to hear you're finally gaining weight. Did you have to do anything else besides avoid gluten?

I'm sensitive to soy but it hasn't been a real issue. I cut out most heavy dairy for ethical reasons but found that going back to them caused some issues so I tend to stray away from those too now! 

Scott Adams Grand Master

Interestingly, cow's milk protein can also cause elevated anti_tTG antibodies, just like gluten can:

 

Wheatwacked Veteran
On 3/11/2021 at 4:06 PM, Graves_Mistakes said:

I cut out most heavy dairy

Try 100% Pasture Fed milk. It feels creamier and tastes better. If I have a glass or regular milk at bedtime is bothers me. !00% pasture fed does not. To be classified Organic milk only needs 120 days pasture. Dairy Fat is Healthy (mooscience.com)

Scott Adams Grand Master

My brother got on the raw milk craze for a few years. The natural probiotics that milk contains get destroyed during pasteurization, but he had issues digesting pasteurized milk, but none with raw milk. Evidently raw milk also has anti-inflammatory properties. I'm not a milk fan no matter what type it is, but do love cheese, and this analogy also holds for aged blue cheeses, which have more health benefits than younger cheeses.

Wheatwacked Veteran

I'll take a wild guess that the raw milk was from pasture fed cows.

Graves-Mistakes Newbie
On 3/18/2021 at 12:03 PM, Scott Adams said:

I'm not a milk fan no matter what type it is, but do love cheese, and this analogy also holds for aged blue cheeses, which have more health benefits than younger cheeses.

I'm not a huge fan of milk either or the dairy and cattle industry ethically speaking, so I tend to avoid it. I'm sure with some research I could find some smaller ethical farms to support and purchase cheese from, but I'm not really in the position to as of right now. Something to look into in the future for sure.

Guest

Update!

Hello everyone, its now almost a month since i posted and over a month since I went gluten free, thanks so much for all your help! I also turned 18 two weeks ago! This forum was a godsend for what was the worst month of my short life. I'm recovering way better now even though I just found out my moisturiser, lip balm and most of my makeup has traces of gluten in it which made me sick for about a week before I found the source. But otherwise it's smooth sailing. I've gained about a kilo from using a lot of milk in cooking and eating my weight in gluten free pasta, but I'm still far off from what I was and I lost a lot of my muscle mass. I am now taking a b-complex every morning, with a cup of sugary milky tea and two hard-boiled eggs. I'm still a picky eater but I've been more eager to try the gluten free substitutes and while I can very keenly taste the difference, its better than nothing! If anyone has some coffee pod recommendations, I'd love to get those as mine are contaminated. I currently drink lactose free milk as I like the taste of it and am a bit wary to go back to the normal stuff as I've drunk this for half a year now. Is lactose free milk not as good? I've talked to my family and they've agreed to get tested at some point when life is slightly less hectic and I discovered that my dads side of the family has a massive line of cancers, organ failures, autoimmune diseases and all sorts of stuff which I'm now speculating could have been from undiagnosed celiac disease. Drinking seems to make pre-existing glutened symptoms worse but doesn't impact me if I'm feeling alright which is a nice development. 

Thanks so much for all your help!!

Scott Adams Grand Master

Our pleasure, and it's great to hear you're doing well!

trents Grand Master

We celebrate with you, Rachel-17!

Lactose free milk is only different from normal milk in that the lactose (the sugar component in milk) has been broken down into a simpler, easier to digest sugar. For people whose gut can't break down lactose normally this can allow them to drink milk again without unpleasant consequences. 

Wheatwacked Veteran

Fermented foods like pickles, made with salt not vinegar will help replenish the good bacteria in your gut. Specifically the lactobacillus, which helps break down lactose, some say it is more important than than the lactase our bodies make because we only make a limited amount and the lactobacillus takes up the slack. Ingredients: Kirby cucumbers, kosher salt, dill, bay leaves for crunchiness, garlic. Takes less than a week. Homemade is best because it is not sterilized for commercial sale.  sales. https://www.makesauerkraut.com/fermented-pickles/

On 3/24/2021 at 5:49 PM, Rachel_17 said:

while I can very keenly taste the difference, its better than nothing

Good to hear you are doing well. After a while you'll find that the foods you can eat that don't have gluten taste better and you'll feel better as a bonus. I start each morning with 340 grams (12 US ounces) of fresh strawberries. 

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,199
    • Most Online (within 30 mins)
      7,748

    Joe Schmie
    Newest Member
    Joe Schmie
    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

    • knitty kitty
      Hi, @thejayland10, Do you still consume dairy?  Dairy can cause increased tTg IgA levels in some people with celiac disease who react to casein, the protein in dairy, just like to gluten.   You might try cutting out the processed gluten free foods.  Try a whole foods, no carbohydrate Paleo diet instead, like the AIP diet (the Autoimmune Protocol Diet by Dr. Sarah Ballantyne, a Celiac herself). Processed gluten free foods can be full of excess carbohydrates which can alter your microbiome leading to Small Intestinal Bacterial Overgrowth (SIBO).  SIBO is found in some people who are not responding to a gluten free diet.  SIBO can elevate tTg IgA levels.  The AIP diet cuts out sources of carbohydrates like rice, potatoes (nightshades), quinoa, peas, lentils, legumes, which starves out the SIBO bacteria.  Better bacteria can then proliferate.   I followed the AIP diet to get rid of my SIBO.  It's a strict diet, but my digestive tract had time to rest and heal.  I started feeling better within a few days.  Feeling improvement so soon made sticking to the AIP diet much easier. References: Small intestinal bacterial overgrowth among patients with celiac disease unresponsive to a gluten free diet https://pmc.ncbi.nlm.nih.gov/articles/PMC7759221/   Luminal antigliadin antibodies in small intestinal bacterial overgrowth https://pubmed.ncbi.nlm.nih.gov/9260801/#:~:text=Luminal total IgA concentrations (p,response to local bacterial antigens.   Potato glycoalkaloids adversely affect intestinal permeability and aggravate inflammatory bowel disease https://pubmed.ncbi.nlm.nih.gov/12479649/
    • trents
      First, welcome to the forum, @boy-wonder! Second, a little clarification in terminology is in order. Granted, inconsistency is rampant when it comes to the terminology associated with gluten disorders, but it has more or less become settled in this fashion: "Gluten intolerance" is a general term that car refer to either celiac disease or NCGS (Non Celiac Gluten Sensitivity). "Gluten Sensitivity" is the shortened version of NCGS. Third, Celiac disease is not an allergy to gluten. It is an autoimmune disorder characterized by gluten ingestion causing the immunes system to attack the lining of the small bowel, causing damage to it over time due to the constant inflammation that wears down the "villi" (mucosal finger-like projections that make up the lining). Over a significant period of time as gluten continues to be consumed, this generally results in impaired nutrient absorption. There are specific blood antibody tests available to check for celiac disease but the testing will not be valid while on a reduced gluten diet or a gluten free diet. Those already having having begun a gluten free diet must go back to consuming generous amounts of gluten for a period of weeks if they wish to pursue testing for celiac disease. Fourth, NCGS shares many of the same symptoms of celiac disease but does not damage the lining of the small bowel as does celiac disease. There is no test for it. A diagnosis for NCGS depends on first ruling out celiac disease. It is 10x more common than celiac disease. Some experts feel it can be a precursor to the development of celiac disease. Eliminating gluten from your life is the antidote for both. Fifth, you state that you are convince you don't have celiac disease by are just "gluten intolerant" (aka, gluten sensitive). How do you know that? It seems to me you are making a dangerous assumption here. I suggest you consider getting formally tested for celiac disease.
    • AllyJR
      Has anyone found a gluten free parakeet seed mix? I can't find a single one! My doctor wants me to make sure all pet food in the house is gluten free but I'm not sure if that's even possible with parakeets. We love our birds so much! I'm wondering if anyone has ever made their own bird seed mix if gluten free ones are not available. 
    • boy-wonder
      Hi, new member. About me, I had been suffering with weight gain, bloating and irregular and extreme bowel habits for a year or so. For example, I went on holiday in 2023, then again I  2024 at the same time of year and every shirt I wore in 2023 didn't fit anymore, couldn't even do the buttons up. Being in my mid 50s I put it down to age and middle aged spread. I'd been lucky all my life having good metabolism and being able to eat anything and as much as I like without putting on any weight, it drove my other half mad. Over a conversation with a friend health and age Related stuff came up and he mentioned someone he knew who had recently found out they were gluten intolerant,  I looked it up and had every one of 8 or so symptoms listed. Bloating,  weight gain,  headaches, brain fog,  constipation, etc etc. I took the decision to give going gluten free a try. Within 1 week I had lost 4 lb, now 7 weeks in I've lost 13 lb. I feel much better in general,  the bloating has severely subsided, it used to keep me awake at night as I felt so uncomfortable.  So pretty much a success story, as everyone here knows,  going gluten free isn't always easy, and eating out can be awkward,  but I consider myself lucky that I appear to have an intolerance rather than an allergy or being celiac.  I can deal with most of the gluten free options at the supermarket but, the big one for me is bread, I love bread, and the gluten free options I've tried are pretty poor. I was at a posh black tie event last night and chose all the food options I thought would be gluten free,  however,  there was bread on the table and I couldn't resist it, I had I small piece of bread,  god it was good, I wanted more but I resisted. Today I feel a bit dodgy, my stomach is churning, and I generally feel a bit urgh.  So here's the question, is that really down to 1 small piece of bread or is it coincidence?  I'd be interested in hearing how other people have reacted to a similar situation,  as I was considering having a day off every now and then and enjoying some lovely fresh bread.
    • ValerieC
      Does anybody know of a guide that ranks reevaluates universities and colleges in terms of their accommodation of celiac disease or food allergies?   Thanks in advance for any leads! Valerie 
×
×
  • Create New...