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

Confused and a little scared...

lrmilas
 Share

Recommended Posts

lrmilas Rookie
lrmilas
Posted

I am about to turn 69, spent the last four years rock climbing in the desert, and suddenly am very very sick.  I rapidly lost 20 pounds, and my iron/ferritin levels plummeted from 100 a month ago to 30 today. I've been unable to sleep... in fact, the nervous symptoms are worse than the physical ones.  Celiac was the last thing on my mind because I was thinking I've been 'pretty much' gluten free.  I never eat any actual gluten products.  But, I have to admit, over the last two years I haven't been fanatical.  We've been to a few restaurants where they were 'pretty sure' the entire meal was gluten free.  The priest at our church accidentally gave me regular communion wafers 3 or 4 times.  etc.  Looking back now I can see many instances where I;ve had small amounts of gluten (like eating chinese food with soy sauce) but never gave it a thought.  But over the last two years I've been steadily getting more and more tired, thinking it was that I needed more protein, vitamins, etc.  Can it suddenly cause this level of exhaustion?    

My new Gastro said "The only thing that makes sense here would be Celiac.  Nothing else would explain the weight loss, iron loss and total exhaustion."

I was also diagnosed with a protozoa called blastocystis.  Because it has persisted, I was treated with Flagyl--a drug that about did me in.  I found out yesterday that the Flagyl did not touch the infection, it's still there and thriving.  The thing is, is a normal healthy person this wouldn't even be treated for blastocystis since it is not considered a harmful bug.  It has been suggested that the problem is Celiac, which prevents the gut  from mounting a normal defense.  Has anyone had this kind of thing happen?

Today is Day 3 of being absolutely 1000% gluten free.  My new Gastro wants to do an endoscopy next Thursday.  I really suspect it will be negative, as it was 10 years ago when this same thing happened to me.  What if labs and endoscopy are negative?  Does that mean I've been imagining that I have Celiac?  Can you be this sick with a normal Endoscopy?  How long until I start feeling better?

Thank you for any feedback.  

 

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

Celiac.com Sponsor (A8-M):


knitty kitty Grand Master
knitty kitty
Posted

Welcome to the forum!

Get checked for THIAMINE Vitamin B1 deficiency!

Flagyl is a medication that keeps thiamine from working.  

Symptoms of Thiamine deficiency include rapid, unintentional weight loss, fatigue (beriberi means "I can't, I can't), anxiety and insomnia.

Here's some helpful articles...

https://www.hormonesmatter.com/metronidazole-toxicity-thiamine-deficiency-wernickes-encephalopathy/

And...

Metronidazole encephalopathy: Uncommon reaction to a common drug

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4477391/

 

My doctors didn't recognize my thiamine deficiency either.  In addition to undiagnosed Celiac, I was on three prescription medications that are known to cause thiamine deficiency.  High dose Thiamine supplementation was needed to restore my health. 

It's important to have Thiamine deficiency treated promptly to reduce risk of permanent damage.  Do contact your doctor.  

The World Health Organization says thiamine deficiency can be diagnosed if improvement is seen after thiamine supplementation has been given.  WHO recommends 500-1500 mg of Thiamine Hydrochloride several times a day for several days.  Improvement can be seen in hours to days.  

In my case, I had improvement within hours.  I was truly astounded.  I've continued taking Thiamine HCl, Allithiamine and Benfotiamine.  The improvements in my health continued for months.  

Hope this helps!

lrmilas Rookie
lrmilas
Posted
  • Author

Thank you so much for the heads up!  I do take a good B Vitamin, and my B12 shots have B1 in them... however I cannot say I've been faithful.  I also have Benfotiamine.  I will take some today and keep on taking!  I REALLY appreciate this information!  

 

knitty kitty Grand Master
knitty kitty
Posted

High dose Thiamine is required to correct Thiamine deficiency otherwise the Thiamine will have trouble getting into cells. Thiamine Transporters turn off during deficiency.  High dose Thiamine can flood the system and get into the cells better.  

Dr. Lonsdale explains here...

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/

lrmilas Rookie
lrmilas
Posted
  • Author

Thank you so much for this.  I  just browsed the study but am too wiped out to read it all right now.  Bottom line, what do you take daily?  How much of what?  I am also a Type 1 diabetic, so I know thiamine is a factor. 

Rogol72 Collaborator
Rogol72
Posted

Speaking from experience, Flagyl is a really nasty antibiotic. It leaves a metallic taste in the mouth hours after taking it, wipes out the gut flora! I have found that being consistent with taking supplements is the only way to get well combined with a strict gluten-free diet and lots of patience ... at least in my case! Even trace amounts of gluten getting in to the body regularly will cause persistent issues. I take a B Complex 50, along with 300mg of Thiamine Hydorchloride, Omega 3 Fish Oil 1g, Vitamin D 2000iu, low dose Iron Bisglycinate 15mg to top up every now and then as needed. I hope you feel better soon.

lrmilas Rookie
lrmilas
Posted
  • Author

I am hanging onto these words.  I don’t know when I last had a trace amount of gluten but I suspect it’s been frequent.  And now here I am powering back iron (120 mg a day), B12 and other things and feeling weak enough to be in a hospital.  If this is celiac related I’m wondering how long before I start to turn around.  I’m on my way to the store to pick up B1.  I just can’t tell you how much I appreciate your taking the time to post.  

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

Celiac.com Sponsor (A8-M):


knitty kitty Grand Master
knitty kitty
Posted
1 hour ago, lrmilas@gmail.com said:

Thank you so much for this.  I  just browsed the study but am too wiped out to read it all right now.  Bottom line, what do you take daily?  How much of what?  I am also a Type 1 diabetic, so I know thiamine is a factor. 

When I was recovering, I took Thiamine Hydrochloride 300 mg every three hours.  That's about as much as the body can absorb in that amount of time.  I had to have Benfotiamine and Allithiamine sent to me, but added those in as soon as they arrived.  I took Benfotiamine 250 mg with meals because this form helps with gastrointestinal healing and diabetes.  I have Type Two.  I took Allithiamine 100 mgs with 100 mgs thiamine hydrochloride in the morning to get my brain going.  

At one point I was taking up to 1500 mg spread throughout the day.  I was able to reduce that over time.  I really had to experiment with my dosage.  Some people take more, some less.

There is a point where you may start feeling icky, but keep taking the Thiamine!  It's a physical change the body goes through when switching from rationing minimum thiamine supplies and anaerobic methods, to operating aerobically with plentiful thiamine as the body starts running as it's supposed to.  It will pass.

I am so glad this has helped you!  Do keep us posted on your progress.  I'd love to hear how quickly you start feeling better.  

 

knitty kitty Grand Master
knitty kitty
Posted

P.S. you may want to lay off the iron and try copper instead.  Thiamine and copper make enzymes that allow cells to hold onto iron.  

lrmilas Rookie
lrmilas
Posted
  • Author

My mind is racing. I have studied nutrition my entire life. I know about B1. Yet it never occurred to me or any doctor to test for it… except once ten years ago when the test came back very low. It was a shock then because I was taking at least some supplements.  As I recall I had lost a huge amount of weight, couldn’t sleep, paced endlessly.  I’m doing that again.

 I moved to the desert to rock climb this late in life but over the last few years I’ve been progressively more tired… trying everything, liver, iron, b12 shots.  Tons of protein.  And then, every day at 2pm I would crash hard. Not just “I need a little nap.” But comatose.  It’s happening now every day and severe enough to frighten me.  I dread it so much… every day I’m on my knees begging to get through it.  I’ve tested heavy metals, phthalates, VOCs. Nothing much there.  Gave up chocolate in case it’s the cadmium and lead. Got rid of wifi.  Nothing has helped. 
 

i checked the multi I do take and at best I am getting one half RDA for thiamin.  I’m sure exercising in the desert like a maniac hasn’t helped.  I’m grieving to think it may be over. And thinking about this… I drink coffee, as a Celiac I’m not eating many grains and none are fortified… a perfect storm for B1 deficiency.   
 

I hope I can keep myself out of the hospital.  Will start thiamine protocol today and pray.  But what is that third kind of thiamine?  Never heard of that.  Thank you so much. 

 

knitty kitty Grand Master
knitty kitty
Posted

Allithiamine is found in garlic.  It is soluble in fat, so that means it can get inside cells easily.  It can cross the blood brain barrier by itself and is especially helpful for neurological symptoms like brain fog, anxiety, ADHD, memory loss, Parkinson's, Alzheimer's, Wernicke's, Aspergers, schizophrenia and depression.  

Benfotiamine is also fat soluble, but needs a carrier, a red blood cell, to cross the blood brain barrier.  Benfotiamine has been shown to be especially effective in diabetes and in healing the gastrointestinal tract.  

Magnesium is needed as a cofactor with Thiamine.  Magnesium citrate glycinate is a gentle, easily absorbed form of magnesium.  This is the form I take.  Magnesium will help you relax and sleep at night.

Yes, Celiac Disease and our dietary changes do set the stage for vitamin and mineral deficiencies.  

Hope you feel better soon.  

Kate333 Rising Star
Kate333
Posted

Get the labs (TTG/IgA) and endoscopy your GI recommends.  That is the only way to confirm for sure whether (or not) you have celiac disease and your symptoms are due to ongoing G exposure for the last 2 years.   I would start with that before speculating or considering other causes for your symptoms.  And I would not worry about the result BEFORE you get them...that only fuels anxiety.  If you do indeed have celiac disease, you will have the knowledge you need to learn how to heal properly and avoid future problems.

If you are diagnosed with celiac disease, you must be advised that.."pretty much gluten-free" is NOT a real gluten-free diet required of all people with celiac disease to heal and maintain gut and body health.  It's not enough to simply reduce G in diet and it's not safe to "cheat once in a while."  And eating out regularly at restaurants, relying on "pretty sure meals are gluten-free" assurances from those places is VERY RISKY because of cross-contamination and lack of safety testing/regulations to ensure gluten-free claims of restaurants are indeed accurate.

Good luck on your healing journey.  

 

lrmilas Rookie
lrmilas
Posted
  • Author
1 hour ago, Kate333 said:

Get the labs (TTG/IgA) and endoscopy your GI recommends.  That is the only way to confirm for sure whether (or not) you have celiac disease and your symptoms are due to ongoing G exposure for the last 2 years.   I would start with that before speculating or considering other causes for your symptoms.  And I would not worry about the result BEFORE you get them...that only fuels anxiety.  If you do indeed have celiac disease, you will have the knowledge you need to learn how to heal properly and avoid future problems.

If you are diagnosed with celiac disease, you must be advised that.."pretty much gluten-free" is NOT a real gluten-free diet required of all people with celiac disease to heal and maintain gut and body health.  It's not enough to simply reduce G in diet and it's not safe to "cheat once in a while."  And eating out regularly at restaurants, relying on "pretty sure meals are gluten-free" assurances from those places is VERY RISKY because of cross-contamination and lack of safety testing/regulations to ensure gluten-free claims of restaurants are indeed accurate.

Good luck on your healing journey.  

 

Thank you Kate. I know everyone wants a positive for sure diagnosis. I have not eaten gluten in any sizable amount in years. I just had the labs done again they are all negative. I am sure endoscopy would be too. However I’m a type one diabetic And the genetic testing I havd done for Celiac puts me at the very highest level of likelihood. I don’t know if I mentioned here that about 10 years ago I lost about 40 pounds and all my iron and it really started after eating a large submarine sandwich and some other major indiscretions and after that the weight just started coming off. When I went to see my endocrinologist she said this looks like celiac and I told her that my endoscopy was negative and she said “I don’t care about any of your labs or endoscopy. Half my type one diabetic patients have celiac and the only way you’re going to know for sure is to be 1000% gluten-free for the next six months.“ I believe she was right because I did what she said and got better. I have lost all but 6 of my teeth, I have had osteoporosis from a young age and a host of other chronic illnesses most of my life but one thing is certain if I stop eating all gluten things turn around pretty fast so I’m going with that for now. I don’t know if there is something else that the doctor could find with a scope but I am so weak I’m really afraid of letting everyone down by just not being able to show up the morning of. So right now I’m leaning towards postponing this till I’m stronger.

knitty kitty Grand Master
knitty kitty
Posted
16 hours ago, lrmilas@gmail.com said:

 However I’m a type one diabetic.

Here's some information about how Celiac Disease may present differently with Diabetes.....

IgA Anti-transglutaminase Autoantibodies at Type 1 Diabetes Onset Are Less Frequent in Adult Patients and Are Associated With a General Celiac-Specific Lower Immune Response in Comparison With Nondiabetic Celiac Patients at Diagnosis

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3447839/

And...

Type 1 Diabetes and Celiac Disease: Clinical Overlap and New Insights into Disease Pathogenesis

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4156157/

And...

Thiamine and diabetes: back to the future?

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8505293/

 

AmyLue Rookie
AmyLue
Posted
On 9/16/2022 at 9:12 AM, lrmilas@gmail.com said:

I am about to turn 69, spent the last four years rock climbing in the desert, and suddenly am very very sick.  I rapidly lost 20 pounds, and my iron/ferritin levels plummeted from 100 a month ago to 30 today. I've been unable to sleep... in fact, the nervous symptoms are worse than the physical ones.  Celiac was the last thing on my mind because I was thinking I've been 'pretty much' gluten free.  I never eat any actual gluten products.  But, I have to admit, over the last two years I haven't been fanatical.  We've been to a few restaurants where they were 'pretty sure' the entire meal was gluten free.  The priest at our church accidentally gave me regular communion wafers 3 or 4 times.  etc.  Looking back now I can see many instances where I;ve had small amounts of gluten (like eating chinese food with soy sauce) but never gave it a thought.  But over the last two years I've been steadily getting more and more tired, thinking it was that I needed more protein, vitamins, etc.  Can it suddenly cause this level of exhaustion?    

My new Gastro said "The only thing that makes sense here would be Celiac.  Nothing else would explain the weight loss, iron loss and total exhaustion."

I was also diagnosed with a protozoa called blastocystis.  Because it has persisted, I was treated with Flagyl--a drug that about did me in.  I found out yesterday that the Flagyl did not touch the infection, it's still there and thriving.  The thing is, is a normal healthy person this wouldn't even be treated for blastocystis since it is not considered a harmful bug.  It has been suggested that the problem is Celiac, which prevents the gut  from mounting a normal defense.  Has anyone had this kind of thing happen?

Today is Day 3 of being absolutely 1000% gluten free.  My new Gastro wants to do an endoscopy next Thursday.  I really suspect it will be negative, as it was 10 years ago when this same thing happened to me.  What if labs and endoscopy are negative?  Does that mean I've been imagining that I have Celiac?  Can you be this sick with a normal Endoscopy?  How long until I start feeling better?

Thank you for any feedback.  

 

I’m so sorry to hear of your troubles…and they sound very familiar!   I was diagnosed with a parasite called cryptosporidium the end of last year.  At first my doctor wasn’t going to prescribe medicine because it usually resolves itself.   The meds did get rid of it!  

Fast forward a few months, I developed diarrhea, weight loss, low iron, fatigue.   Celiacs is not known in my family, but it was later discovered that I carry the gene.  My first scopes all came back “clean”.  During my second ones, biopsies of my small intestine were taken and showed “near total villi blunting”.  
 

Fast forward to today, I am much better. Hiked the mountains again and have most my strength back.   My local doctors believe there was a correlation between the crypto taking over and Celiacs.

 I have also been on budesonide to help heal my villi and TPN (total parental nutrition, through IV).  This is my last week of TPN. I am completely gluten free now! I am Not going down that road again!

AmyLue Rookie
AmyLue
Posted

To add to my previous reply,  I was very active and never sick! I hadn’t been to the doctor in over 5 years (other than annual well woman exam)!!   But looking back, I can see small signs of gluten bothering me.

lrmilas Rookie
lrmilas
Posted
  • Author
18 minutes ago, AmyLue said:

I’m so sorry to hear of your troubles…and they sound very familiar!   I was diagnosed with a parasite called cryptosporidium the end of last year.  At first my doctor wasn’t going to prescribe medicine because it usually resolves itself.   The meds did get rid of it!  

Fast forward a few months, I developed diarrhea, weight loss, low iron, fatigue.   Celiacs is not known in my family, but it was later discovered that I carry the gene.  My first scopes all came back “clean”.  During my second ones, biopsies of my small intestine were taken and showed “near total villi blunting”.  
 

Fast forward to today, I am much better. Hiked the mountains again and have most my strength back.   My local doctors believe there was a correlation between the crypto taking over and Celiacs.

 I have also been on budesonide to help heal my villi and TPN (total parental nutrition, through IV).  This is my last week of TPN. I am completely gluten free now! I am Not going down that road again!

Wow thank you for posting this! Yousaid just what I needed to hear right now. I had to cancel my endoscopy this week because I’m just too sick and besides unless I had something like cancer what can it tell us? But clearly my parasite is back and flourishing and I have been prescribed two powerful drugs to try to knock it out. That prescription won’t be in until tomorrow so I am waiting through another day.  Meanwhile I am learning a lot about this particular parasite and what it does and doesn’t like. For instance blastocysts love probiotics so I have been unwittingly giving it exactly what it needs to thrive.
 

i’m still too close to my situation to really understand it. I almost forget that the root problem is celiac. However my new gastroenterologist thanked me for sending him my genetic testing and I think for him that settles it. So I guess the plan now is to get rid of the parasite and continue healing gluten-free.

Sounds like you have been through a lot and how wonderful that you are regaining  some strength and out hiking again! That must be so rewarding!  It sure would be great to stay in touch and compare notes along the way. I’m really happy you wrote. 

 

 

 

AmyLue Rookie
AmyLue
Posted
15 hours ago, lrmilas@gmail.com said:

Wow thank you for posting this! Yousaid just what I needed to hear right now. I had to cancel my endoscopy this week because I’m just too sick and besides unless I had something like cancer what can it tell us? But clearly my parasite is back and flourishing and I have been prescribed two powerful drugs to try to knock it out. That prescription won’t be in until tomorrow so I am waiting through another day.  Meanwhile I am learning a lot about this particular parasite and what it does and doesn’t like. For instance blastocysts love probiotics so I have been unwittingly giving it exactly what it needs to thrive.
 

i’m still too close to my situation to really understand it. I almost forget that the root problem is celiac. However my new gastroenterologist thanked me for sending him my genetic testing and I think for him that settles it. So I guess the plan now is to get rid of the parasite and continue healing gluten-free.

Sounds like you have been through a lot and how wonderful that you are regaining  some strength and out hiking again! That must be so rewarding!  It sure would be great to stay in touch and compare notes along the way. I’m really happy you wrote. 

 

 

 

 

15 hours ago, lrmilas@gmail.com said:

Wow thank you for posting this! Yousaid just what I needed to hear right now. I had to cancel my endoscopy this week because I’m just too sick and besides unless I had something like cancer what can it tell us? But clearly my parasite is back and flourishing and I have been prescribed two powerful drugs to try to knock it out. That prescription won’t be in until tomorrow so I am waiting through another day.  Meanwhile I am learning a lot about this particular parasite and what it does and doesn’t like. For instance blastocysts love probiotics so I have been unwittingly giving it exactly what it needs to thrive.
 

i’m still too close to my situation to really understand it. I almost forget that the root problem is celiac. However my new gastroenterologist thanked me for sending him my genetic testing and I think for him that settles it. So I guess the plan now is to get rid of the parasite and continue healing gluten-free.

Sounds like you have been through a lot and how wonderful that you are regaining  some strength and out hiking again! That must be so rewarding!  It sure would be great to stay in touch and compare notes along the way. I’m really happy you wrote. 

 

 

 

I certainly hope treating the parasite helps!!!   Definitely do the scopes though, and have them biopsy small intestine to check for villi damage! You may need a steroid and modified diet to help heal if there is any damage!!!!   I found out a few weeks ago that eating out is a scary option for me! I accidentally got gluttened and was sick for a few days! 

AmyLue Rookie
AmyLue
Posted
4 minutes ago, AmyLue said:

 

I certainly hope treating the parasite helps!!!   Definitely do the scopes though, and have them biopsy small intestine to check for villi damage! You may need a steroid and modified diet to help heal if there is any damage!!!!   I found out a few weeks ago that eating out is a scary option for me! I accidentally got gluttened and was sick for a few days! 

Also, I looked up your blastocysts. One treatment is Nitazoxanide.  That is same medication I was given for my crypto!!  3 days worth of pills was all it took!  No antibiotics.   Strong antibiotics can also cause C-Diff.

lrmilas Rookie
lrmilas
Posted
  • Author
10 hours ago, AmyLue said:

Also, I looked up your blastocysts. One treatment is Nitazoxanide.  That is same medication I was given for my crypto!!  3 days worth of pills was all it took!  No antibiotics.   Strong antibiotics can also cause C-Diff.

Thank you for this.  I think that may be the next drug if the Tinadazole doesn’t work. I really appreciate you sharing this. 

lrmilas Rookie
lrmilas
Posted
  • Author

I think my blasto is back. The single dose of Tinidazole cleared up my diarrhea for a few days, now I have the rumbling stomach  and fatigue again. It’s only been one week.  I am wondering about alinia. Did you have side effects?  It really worked???  I need to get my doctor to pay attention to this!  

knitty kitty Grand Master
knitty kitty
Posted

Just repeating that those drugs for the parasites cause Thiamine deficiency.  So do antibiotics.

Gastrointestinal Beriberi (one way Thiamine deficiency presents) causes rumbly tummy and fatigue.

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


  • Member Statistics

    • Total Members
      126,307
    • Most Online (within 30 mins)
      7,748
    Sharon kovesdy
    Newest Member
    Sharon kovesdy
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.3k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • ALynn
      Advantages vs. Disadvantages of having an official Celiac diagnosis

      By ALynn · Posted

      Many studies need the diagnosis to participate. 
    • cristiana
      Options - 7 year old boy - Helicobacter pylori and serology

      By cristiana · Posted

      That is such a lovely post - thank you so much, @Kathleen JJ for taking the time to write.  I am so glad I actually saw it as at the moment I'm not really supposed to be looking at the forum.  I have a couple of long overdue work projects so I was taking a breaks from the forum to concentrate on my writing. 🙂 You have handled/are handling this situation so well.  What you say about gluten-free alternatives is so true about being laden with fats and sugar, and what I find very difficult to understand is that sometimes in the UK cereals and bread aren't fortified in the same way that glutenous equivalents are - surely if anyone needs minerals and vitamins added, it's coeliacs?!  Anyway, the best way forward is to cook from scratch when time and money allows. Here is a standard cake recipe.  You will need to source gluten free self-raising flour.  If that isn't a thing you have where you live, you will need plain gluten free flour then have to add the raising agent/baking powder separately, according to the brand's instructions.  This cake can be filled with jam, or with real cream and strawberries, or topped with melted chocolate or just powdered sugar.  Or use frosting.  If you look up different flavours of Victoria Sandwiches, you can see you can make them coffee flavoured, chocolate flavoured, or lemon, by adding those flavourings.   If you need me to supply that info let me know. This cake was made famous by Queen Victoria and is a staple of British baking.  Loosely based on the French Quatre Quarts cake, another way of making it is weighing the eggs with shells on, say three, and then that same weight is applied to the margarine, flour and sugar that you use.  Make sure you prepare the tins well, as the cakes stick easily. https://www.freee-foods.co.uk/recipes/delicious-gluten-free-victoria-sponge/ You can make a third layer, it looks quite impressive stacked up high! I am sure others will suggest recipes if you put in a request on a specific thread. Lovely to catch up with your news, and I hope that you will stick around for a bit to let us know how things go! Bon appetit!   
    • Kathleen JJ
      Options - 7 year old boy - Helicobacter pylori and serology

      By Kathleen JJ · Posted

      @cristiana First of all I want to thank you for your clear and gentle approach to my questions and emails. I was quite in shock because we were totally not expecting this scenario. We're 2 weeks later now and things have settled more. After the biopsie came back positive the rest of our family got tested as well but non of us have it. But now we know what we're up against, we told him. We laid out a table with crisps he likes (and are gluten-free) and had a little festive Friday-night moment and then told him that we finally had the results of his test. We had explained the gastroscopy to him that the doctor had found some substances in his blood and wanted to look at this tummy from the inside. We told him that he had seen that there was a little wound there, explaining the horrible pains he had had. That it was easy to cure this wound and make that it never would come back: leaving out some type of foods. Both our children had been asking us for a long time to take a packed lunch to school instead of eating at the cafeteria so we ended with the 'good news' that they now can bring a packed lunch. Our daughter was over the moon, our son at first as well but then he was really sad about leaving his friends behind at the dinner table (children who eat hot meals and packed lunches are different dining areas) and that he would not be able to sit with his friends who take packed lunches as the seats are set and he's the last one in and would have to sit alone. So that was quite sad [I went to the headmaster and asked her to maybe have a shuffle of the diner tables after New Years so he also can sit with a friend and she was going to look into it]   We are now trying out different types of foods. I at this point have no idea what to put in his packed lunch as before I'd take some sandwiches and put cheese or ham on them, but the gluten-free bread I've found so far doesn't really allow for that (it breaks and falls apart). So now I'm on a hunt for nicely tasting things to put in his lunchbox.   I've been shocked somewhat to see that a lot of gluten-free products are indeed gluten-free and thus healthier for him, but are also contain much more fats and sugar then their gluten full counterparts... I didn't expect that to be honest...   Anyway, you mentioned that your daughter and her friends love your gluten-free cake. I'm very interested in a recipe. It is customary in Belgium that if a child has his birthday, they give a treat to the rest of the class, and that treat is most often cake or cupcakes. He will not be able to taste anyones treats anymore so I asked the teacher for all the birthdays and am planning to bake some for him right before those birthdays, give to the teacher so she can give to him. But this entails I have a good cake recipe 🤭. Would you be so kind to share this with me?   Kind regards, Kathleen
    • Raquel2021
      gluten-free and continued upper left side pain after drinking wine

      By Raquel2021 · Posted

      Yes stress can .make the pain worse. That being said it is taking years for my body to heal. I am not able to eat out as 98 % of restaurants do not know how to cook for celiacs.  I only eat out on special occasions. Any time I eat gluten I feel there is a tourch going through my digestive system specifically in the area you have mentioned.  Like where the deudenal is . I am very sensitive to cross contamination so any small amount of gluten makes me sick.
    • trents
      Gluten free diet - are these symptoms normal?

      By trents · Posted

      @Ems10, celiac diagnosis normally involves two steps. The first one is serum antibody testing which you may have already have had done and are waiting on the results. The second step involves and endoscopy (aka, gastroscopy) with biopsy of the small bowel lining. This second step is typically ordered if one or more antibody tests were positive, is a confirmation of the serum antibody testing and is considered the gold standard diagnostic test for celiac disease. Now hear this, you should not be eating gluten free weeks or months in advance of either kind of testing. Prematurely going on a gluten free diet can and will sabotage the results of the endoscopy/biopsy should you get a referral to a GI doc who would want to do that. Eliminating gluten from the diet causes causes inflammation to subside which allows the small bowel ling to heal such that the damage they would be looking for is no longer there.
×
×
  • Create New...