Jump to content

  • 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

Just Had My Upper Endoscopy

monkeypuss

Recommended Posts

monkeypuss Rookie
monkeypuss
Posted

Hey! Thought i should prolly sign up to these forums as its kinda looking like i probably have celiacs. *waves* ello!

So abit about me, for years and years i've suffered:

*severe bloating

*stomach pains

*extreme fatigue

*lots of mouth ulcers

*and a rash which i've been told now looks just like DH

my nan had celiacs and i've suspected i may have it for a long time but never really bothered to do anything about it, I never ate alot of bread and stuff anyways so thought i was fine..then in february this year i started having agonizing stomach pains and crazy bloating where i stopped eating for months...had the blood test to check for celiacs and nothing came up, so completely thought it wasnt that.

My GP was rather rude when i said i was thinking of trying a gluten free regardless of the test results ( i was clutching at straws to try and work it out myself cos the doctors were being no help) then i saw a gastroenterologist on the NHS (i'm in the UK) and he poked around, said he couldnt feel anything bad and told me to start eating gluten again in a really smarmy way. but i didnt.

So after everything with the NHS and waiting ages (missing college cos of being poorly the whole time) i decided to see a gastroenterologist privately, cost a bomb. Ended up seeing the senior one for this area and right away he thought celiacs, he poked my stomach, said the pain fitted with it, he saw me itching my eczema during our chat and said omg! that looks just like DH to me! he said although i didnt have diahorea and it didnt show up in my blood tests it didnt mean i didnt have it and he was so sure i had it he said 'i'm going to write to that other gastroentrologist to tell him he had it wrong when your results come back positive for it.

Although he's really experienced and was so sure i was still unconvinced because of what my gp and the other specialist had said to me, i hoped it was celiacs though as this is better than cancer or anything else i was worried about.

So i got told i had to have my biopsy in a month, so 2 weeks before i started to eat gluten again, and right away the pain which had eased off greatly after a few months of gluten free came back, the rash came back and i felt terrible, especially as the 2 weeks went on.

So i had my upper endoscopy and biopsy today!! i was so afraid and really proud because i ended up deciding not to be sedated, the size of the needle freaked me out too much! it was all over so quick tho, literally a minute or 2. It felt like swallowing a TV aerial (the kind you find on cars) and i was sorta gagging slightly and coughing abit the whole time but i'm a total wuss and i've gotta say it was really nothing!! i could feel it inside my stomach the whole time which was really really weird and i could feel him pulling off samples :P but it didnt hurt and i didnt have a sore throat at all. This evening i've had a lot of stomach pains however, but i think thats just cos i've been feeling worse from eating gluten for 2 weeks.

Anyways i get my results in 2 weeks (too long!!!) but the doc who did it said he's still sure its celiacs because he could see scalloping inside me...he took 3 samples from me, each slightly smaller than a grain of rice, i asked to see them! looked like raw salmon lol! so i'm really hoping the tests come back positive for it, although i'm trying not to get my hopes up too much incase its not, but i thought i should sign up on here regardless, cos even if its not celiacs i evidently have some kinda issue with gluten, or wheat or something :P

I'm just glad i dont have to eat it anymore, and looking forward to putting on some weight so i can fit into my favourite clothes again decently! :D and ofcourse praying i get some kinda result to let me know whats wrong!!

a question to everyone on here i have to ask though is, if it is celiacs, is there any drugs or something i can take to get better sooner, cos it was over a month before i started feeling much better on a non-gluten diet before and i want to enjoy my summer and get better soon!! :P

thanks for reading my story guys!! love christina xx

EDIT: um..yeah cars in the uk dont have radio aerials believe it or not..they have TV ONES!! :P lmao! oops! i'm not even blonde either! i should be! hahaha

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

Celiac.com Sponsor (A8-M):


Ursa Major Collaborator
Ursa Major
Posted

Hi, and welcome to these boards. Obviously you have an issue with gluten. It would have been a good idea to have your rash biopsied by a dermatologist, because if that skin biopsy would come back positive, you would have an automatic firm diagnosis of celiac disease. Not all people with celiac disease have DH, but the only thing that causes DH is celiac disease. And the only valid treatment is the gluten-free diet.

Anyway, unfortunately, your biopsy may come back negative, because your villi may have healed while on the gluten-free diet. And two weeks back on gluten is not long enough to really cause all that much damage again.

But you obviously realize that gluten is bad for you, and you won't eat it anymore, even if your biopsy comes back negative, right?

ravenwoodglass Mentor
ravenwoodglass
Posted

It sounds like you have a good GI that at least knows that the scalloping is related. Yay!!! I am assuming you are back on the diet now that the biopsy is done with. Welcome to the boards and the world of gluten free healing. I hope you are feeling much better soon. Ask any question here you need to and feel free to vent when needed, you found the right place for info and support.

Lisa Mentor
Lisa
Posted

Hi Christina! I just wanted to add my welcome. Everything that you need to know can be learned by these good people.

Welcome to the Club! ;)

MELINE Enthusiast
MELINE
Posted
a question to everyone on here i have to ask though is, if it is celiacs, is there any drugs or something i can take to get better sooner, cos it was over a month before i started feeling much better on a non-gluten diet before and i want to enjoy my summer and get better soon!! :P

Hello christina

As far as I know there is no drug that can help you feel better. You can help your immune system and your intestine by taking some probiotics and some vitamin supplements, but this is not going to make a difference as far as your pain is concerned (at least it didn't for me...)

I hope your biopsy is positive, but even if it isn't you still know that gluten is making you feel bad. In my biopsy I was totally sleeping...That was cool! I felt nothing at all.

Any way I hope you start feeling better really soon. Have you thought about taking the blood tests too?

Beautiful photo!!!

Kisses

Meline

monkeypuss Rookie
monkeypuss
Posted
  • Author

hey! aw thanks guys :) yeah i've decided i'm never eating gluten again, regardless of the results :P after being off it then going back on it was amazing the difference i noticed of how ill it made me feel, and especially how tired i was! i was actually told to go back on it for 1 week because of my pain but he said usually people are told to eat it for 2...so i did the 2 anyways :P hopefully will be worth it :P

yeah i had the blood test some months ago and it came back negative, which convinced me it couldnt be that..but i dont eat bread, cakes, pizza, things with gluten in all that much...so maybe that was why

although i must say, when i first got really bad pains, i felt too poorly to cook myself dinner, so i ate a whole tray of cookies instead...and i'm thinking now thats probably about the worst thing i could have done!! lol

so i'm trying now to make sure i dont get my food contaminated, going to buy a seperate toaster for my gluten free bread and use separate gluten-free butter and have my own chopping board, can anyone think of anything else i'd need to get? this is all so new to me, i never even thought about contamination before the doctor said! heh

IMWalt Contributor
IMWalt
Posted

Good luck with your biopsy. I had mine on the 14th, and just got the results. They said it was negative for celiac. However, I have stopped eating it since the biopsy, and my symptoms are gone again. Like you, I had bloating, cramps, gas, intermittant diarhea, and low RBC. My blood tests were also negative, but I am staying gluten-free since when I eat it, I have problems. Plus, it makes it that much easier to cook for my 21 Y.O. daughter, who was diagnosed with negative biopsy but positive bllod tests.

I'm with you. Eat what makes you feel better.

Walt

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

Celiac.com Sponsor (A8-M):


Vanquish Rookie
Vanquish
Posted

I too am getting my upper endo done here on the 2nd of june. However something is confusing me, when people adamantly argue against going gluten free before a biopsy is it only for people that may or may not have had gluten as a staple in their diet for years and years prior? Because i guess im failing to see how my 20 years of damage could heal up in week or even a month before my biopsy if i went gluten free. And my doctor said even if i did go gluten free before my biopsy it wouldn't matter because the damage to the villi is sill apparent. Hmmm....

ravenwoodglass Mentor
ravenwoodglass
Posted
I too am getting my upper endo done here on the 2nd of june. However something is confusing me, when people adamantly argue against going gluten free before a biopsy is it only for people that may or may not have had gluten as a staple in their diet for years and years prior? Because i guess im failing to see how my 20 years of damage could heal up in week or even a month before my biopsy if i went gluten free. And my doctor said even if i did go gluten free before my biopsy it wouldn't matter because the damage to the villi is sill apparent. Hmmm....

While a lot of the damage is not a quick repair what they are looking for is damage to the villi. The villi can repair themselves at a pretty quick rate, and in addition you have 22 ft of small intestine and the damage can be patchy. Biopsies have a high false negative rate for many reasons so to get the best results from it a person should continue to eat gluten until all the testing THEY choose to do is done. The best test for the need of the diet however is how much the diet helps. If you are already gluten free and the doctor demands a challenge a return of illness is also a valid diagnostic.

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. xxnonamexx
      - xxnonamexx posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Fermented foods, Kefir, Kombucha?

      I have read fermented foods like sauerkraut, pickles, Kefir, Kombucha are great for gut health besides probiotics. However I have searched and read about ones that were tested (Kefir, Kombucha) and there is no clear one that is very helpful. Has anyone take Kefir, Kombucha and noticed a difference in gut health? I read one is lactose free but when tested...
    2. SamAlvi
      - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      High TTG-IgG and Normal TTG-IgA

      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing...
    3. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Blood tests for thiamine are unreliable. The nutrients from your food get absorbed into the bloodstream and travel around the body. So, a steak dinner can falsely raise thiamine blood levels in the following days. Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte...
    4. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine?
    5. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine. Legumes (beans) do contain thiamine. Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and Cobalamine B12 are mostly found in meats. Meat, especially organ...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,876
    • Most Online (within 30 mins)
      7,748
    pilber309
    Newest Member
    pilber309
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • xxnonamexx
      Fermented foods, Kefir, Kombucha?

      By xxnonamexx · Posted

      I have read fermented foods like sauerkraut, pickles, Kefir, Kombucha are great for gut health besides probiotics. However I have searched and read about ones that were tested (Kefir, Kombucha) and there is no clear one that is very helpful. Has anyone take Kefir, Kombucha and noticed a difference in gut health? I read one is lactose free but when tested was high in lactose so I would probably try a non dairy one. Thanks
    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.