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

Endoscopy Tomorrow

mary77

Recommended Posts

mary77 Newbie
mary77
Posted

I'm going in for an EGD and intestinal biopsy tomorrow and I'm so anxious about it. I almost want to be diagnosed with celiac disease just so I can have a clear path forward. I'm also worried about my dad and sister who also exhibit many celiac signs but have never been tested. Here's my story.

I can remember having bowel urgency even as a child, but my symptoms really kicked in when I entered college. It started with eczema on my scalp and horrible cramping and burning in my stomach. I was put on Prilosec and had an endoscopy to look for an ulcer. Doc didn't find anything and didn't even look in my small intestine, let alone biopsy. I was told that I had a small hiatal hernia and IBS and they sent me on my way. Over the years, the pains have subsided a bit, but I've developed chronic diarrhea. I've had diarrhea every day for the past 12 years. I had my first child in 2005 and then suffered 3 consecutive miscarriages. Doctors did all the standard genetic testing and couldn't find the reason. I did carry my daughter to term after that in 2008. Since she was born, I've been exhausted all the time. I thought maybe that's just how moms feel. But then the diarrhea started to get worse. I've been up to 4 - 8 bowel movements per day. I started looking online and found information on celiac disease. Suddenly lots of things made sense. I removed all gluten from my diet for 4 days and immediately had more energy and less urgency to use the bathroom. Then I got scared and wanted a diagnosis before getting too far into feeling better. I'm tired of people thinking that this is all in my head. So I called my old gastro. They got me an appt within the week. So I got back on gluten and felt horrible immediately. I hope it's not all in my head.

For reference, my father has been diagnosed with diverticulosis, lactose intolerance, and Parkinson's disease. My sister suffers from menstrual irregularities, migraines, eczema, stomach pains, and weight gain. Neither have been tested.

I've spent a lot of time on this site this past week. You are all strong wonderful people with amazing and sad and inspirational stories. I'll definitely be sticking around here if i get a positive diagnosis.

Mary

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

Celiac.com Sponsor (A8-M):


OasisFlyer Newbie
OasisFlyer
Posted

I'm new here, too Mary and I'm going to my doc tomorrow to beg for testing. As you said, I too almost WANT to be diagnosed with something so I know what is wrong with me. I just made a post of my own, so I won't go into all the details yet, but you are right about this site (which I have spent a lot of time on this past week as well), these people are amazing!!!!!! Best of luck to you, and here's to *hoping* we have gluten issues!

ravenwoodglass Mentor
ravenwoodglass
Posted

You could have a false negative on testing so do keep that in mind. When you're done with testing go on the diet for a good strict trial. Sometimes the body can tell us what the tests cannot.

mary77 Newbie
mary77
Posted
  • Author

I'm trying to prepare myself for that fact, but I feel like I'm going to lose it if they tell me nothing's wrong. I will probably go on the diet regardless, but I know that I will get very little support here at home without a positive diagnosis. I've had a rough week this week and hearing things like "I don't know how wheat can all of a sudden make you sick" doesn't help my mental state. *sigh*

mary77 Newbie
mary77
Posted
  • Author

I'm new here, too Mary and I'm going to my doc tomorrow to beg for testing. As you said, I too almost WANT to be diagnosed with something so I know what is wrong with me. I just made a post of my own, so I won't go into all the details yet, but you are right about this site (which I have spent a lot of time on this past week as well), these people are amazing!!!!!! Best of luck to you, and here's to *hoping* we have gluten issues!

Nice to meet you OasisFlyer. I hope you have luck at the doctor on Friday. I'll update here if I find out anything tomorrow. I'll also look for your post about your story. :)

ravenwoodglass Mentor
ravenwoodglass
Posted

I'm trying to prepare myself for that fact, but I feel like I'm going to lose it if they tell me nothing's wrong. I will probably go on the diet regardless, but I know that I will get very little support here at home without a positive diagnosis. I've had a rough week this week and hearing things like "I don't know how wheat can all of a sudden make you sick" doesn't help my mental state. *sigh*

It can make you sick 'all of a sudden' because celiac usually needs a trigger like a severe illness, injury or stress. Childbirth is a common trigger for women, for example. Sometimes it takes our recovery to make a 'believer' out of our families and when they see a reaction after we have healed and accidentally get glutened that can help also. Do try the diet strictly and you don't have to wait for the biopsy results. You can start the diet the day the tests are done. Sometimes our body gives us the answer before we even get the results.

OasisFlyer Newbie
OasisFlyer
Posted

I'm trying to prepare myself for that fact, but I feel like I'm going to lose it if they tell me nothing's wrong. I will probably go on the diet regardless, but I know that I will get very little support here at home without a positive diagnosis. I've had a rough week this week and hearing things like "I don't know how wheat can all of a sudden make you sick" doesn't help my mental state. *sigh*

Oh, Mary, I feel the exact same way. If my blood tests come back normal (if the doc will even DO the testing in the first place) I am going to lose it! I'm going on the diet regardless, too, and luckily my fiance is amazing with support, my brother is as well, but my parents... not so much. What you said sounds just like something they would say to me, and it doesn't help the mental state at all. It's good to know there is an online community of support though!

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

Celiac.com Sponsor (A8-M):


nuttmegs17 Apprentice
nuttmegs17
Posted

Oh, Mary, I feel the exact same way. If my blood tests come back normal (if the doc will even DO the testing in the first place) I am going to lose it! I'm going on the diet regardless, too, and luckily my fiance is amazing with support, my brother is as well, but my parents... not so much. What you said sounds just like something they would say to me, and it doesn't help the mental state at all. It's good to know there is an online community of support though!

I hear you on the "lose it" part...I lost it earlier when my thryoid tests came back normal....I sooooo wanted it to be my graves rearing it's ugly head again, as that treatment is relativly straightforward...I'm terrified I'll never get a good answer and be like this forever (can you tell I'm getting anxious?!)

Good luck to you both!

mary77 Newbie
mary77
Posted
  • Author

Well...results are in. Negative bloodwork and negative biopsy. I'm back to square one.

Thanks for all of your kind thoughts. I wish you all the best.

ravenwoodglass Mentor
ravenwoodglass
Posted

Well...results are in. Negative bloodwork and negative biopsy. I'm back to square one.

Thanks for all of your kind thoughts. I wish you all the best.

Now is when you try the diet. False negatives on both blood and biopsy are not uncommon. Go on the diet strictly for at least a couple of months.

missj Rookie
missj
Posted

I totally get the lack of support. That's why I don't want to just go gluten-free without something to back it up. But I also refuse to make myself misrable for the sake of a diagnosis. So I'm hoping I can find some answers in the genetic tests.

ravenwoodglass Mentor
ravenwoodglass
Posted

I totally get the lack of support. That's why I don't want to just go gluten-free without something to back it up. But I also refuse to make myself misrable for the sake of a diagnosis. So I'm hoping I can find some answers in the genetic tests.

Just keep in mind that the genetic tests are not diagnostic. They can be a piece of the puzzle but there are folks with the most common celiac associated genes that never develop celiac and there are celiacs that don't have either of the two most commonly associated genes. I hope you get some answers and some relief soon. Sometimes what makes a believer out of those who are less supportive is seeing the positive changes that come about after we have been on the diet strictly and healed.

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. 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...
    2. 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...
    3. 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?
    4. 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...
    5. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc. Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food....
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,872
    • Most Online (within 30 mins)
      7,748
    Koyanna
    Newest Member
    Koyanna
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • 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?  
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
×
×
  • 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.