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 Celiac.com!
    eNewsletter
    Donate

Pre-testing But I'm Willing To Put Money On The Outcome...


Arcolite

Recommended Posts

Arcolite Newbie

Hi, new poster but a long time lurker.

My family and I are currently going through the testing process but we're more or less certain that it's either a extreme wheat allergy or celiac. Only the tests will tell for sure.

My mother and my sister have slightly different symptoms and reactions, to me, but still off the same foods.

Personally I have been suffering with an unknown stomach complaint for the last 8-10 years and despite countless trips to the doctor over those years, not once was celiac or wheat allergy ever mentioned. My mother and sister have had the same expirience with the same doctor.

So far I have had medication for IBS which did nothing, Anti-Depressants (which did help me cope, but didn't stop the symptoms) and lots of counselling which again, helped me cope, but didn't solve anything.

My symptoms range from...

Panic Attacks and Anxiety during bad stomach episodes. I've suffered from Emetophobia since I was tiny but only started getting anxiety and panic attacks when the bad guts started.

I have been Underweight since I can remember and no matter what I eat I cannot put on weight. I have very little energy and feel cold most of the time.

Before I started the wheat free diet I used to get very bloated and my stomach is was always tender and uncomfortable to touch.

My BM was irregular and quite often loose. The doctor used to link this with IBS, but it could also celiac.

I can always tell when I'm about to have a reaction to something I've eaten because I get very tired and irritable after eating, my stomach tenses up in a knot and I get very flushed in the face followed by cold chills and cramps. If the reaction is bad I'll end up with anxiety and panic attacks then being off food for the next day and my BM will be loose and shall we say "toxic".

I'm not a gambling man, but as all the IBS and anxiety stuff didn't fix the problem, Celiac is looking a pretty good bet right now.

When I read the sypmtoms for the first time it was like a tick sheet.

Why did the doctors never think to check for this sooner? Thesame doctor missed it not just once, but with three different people with similar complaints (Mum and Sister) :(

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



skyyblues Newbie

Hello - I can relate.... I have had stomach problems as long as I can remember but just thought it was just me. I have an Aunt that is the same way. I have had horrible rashes and exzema for the last 2 2/1yrs. Doc after doc has either treated me as nuts or shoved prednisone on me. I have been to regular docs, dermatologists, allergists, and none of them had ever suggested anything other than steroids and more itch pills. I happen to go to my "new" regular doc a month ago when I was having a semi bad breakout and he looked at me and said "Has anyone ever tested for Celiac Sprue?" I was like what??? He did a blood test - negative- not suprised as have been on steroids since last Nov. I looked up Celiacs and thought wow! I have been gluten free for 2 weeks and have not felt this good ever! I can eat without having to know where the bathroom is.... I had one very bad reaction out of town - ER and all - so when I came back my doc suggested a endoscopy to confirm. I knew I would have to go back to eating "it" in order for the test to be done. I went for my consult today and cried when I agreed to eat "regular" again for 4 weeks. I went out to dinner tonight and I am already starting to break out. I am not sure if I will make it but will try. I have both a endoscopy and colonoscopy scheduled to confirm Celiacs and/or rule out anything else. They took 6 vials of blood today to run a bunch of other tests as well. I can't believe I have finally found 2 doctors who care enough to look a little further and actually try to find out what is wrong.

Well I have rambled long enough. Time for an itch pill and bed. I am scared to wake up tomorrow and see what I look like... :( ........Good Luck to you and let me know how everything works out. I can tell you one thing though no matter what they find in my tests I am going back to gluten free as soon as this h--- is over!!!!

Link to comment
Share on other sites
ang1e0251 Contributor

Welcome and I'm sorry you are feeling so crappy. Hang in there for your testing. I think I would call the GI office every day and ask if they have any cancellations so you could move the time of your test up.

Link to comment
Share on other sites

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,091
    • Most Online (within 30 mins)
      7,748

    Grammar B
    Newest Member
    Grammar B
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Oh, okay. The lower case "b" in boots in your first post didn't lead me in the direction of a proper name. I thought maybe it was a specialty apothecary for people with pedal diseases or something.
    • Scott Adams
      In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease. According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy: Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases No More Biopsies to Diagnose Celiac Disease in Children! There are other things that may cause elevated tTg-IgA levels, but in general a reaction to gluten is the culprit:    
    • cristiana
      Hi @trents Just seen this - Boot's is a chain of pharmacies in the UK, originally founded in the 19th Century by a chap with the surname, Boot.  It's a household name here in the UK and if you say you are going to Boot's everyone knows you are off to the pharmacist! Cristiana
    • Denise I
      I am looking to find a Celiac Dietician who is affiliated with the Celiac Disease Foundation who I can set up an appointment with.  Can you possibly give some guidance on this?  Thank you!
    • Posterboy
      Nacina, Knitty Kitty has given you good advice. But I would say/add find a Fat Soluble B-1 like Benfotiamine for best results.  The kind found in most Multivitamins have a very low absorption rate. This article shows how taking a Fat Soluble B-1 can effectively help absorption by 6x to7x times. https://www.naturalmedicinejournal.com/journal/thiamine-deficiency-and-diabetic-polyneuropathy quoting from the article.... "The group ingesting benfotiamine had maximum plasma thiamine levels that were 6.7 times higher than the group ingesting thiamine mononitrate.32" Also, frequency is much more important than amount when it comes to B-Vitamin. These are best taken with meals because they provide the fat for better absorption. You will know your B-Vitamin is working properly when your urine becomes bright yellow all the time. This may take two or three months to achieve this.......maybe even longer depending on how low he/you are. The Yellow color is from excess Riboflavin bypassing the Kidneys....... Don't stop them until when 2x a day with meals they start producing a bright yellow urine with in 2 or 3 hours after the ingesting the B-Complex...... You will be able to see the color of your urine change as the hours go by and bounce back up after you take them in the evening. When this happens quickly......you are now bypassing all the Riboflavin that is in the supplement. The body won't absorb more than it needs! This can be taken as a "proxy" for your other B-Vitamin levels (if taken a B-Complex) ...... at least at a quick and dirty level......this will only be so for the B-1 Thiamine levels if you are taking the Fat Soluble forms with the Magnesium as Knitty Kitty mentioned. Magnesium is a Co-Factor is a Co-factor for both Thiamine and Vitamin D and your sons levels won't improve unless he also takes Magnesium with his Thiamine and B-Complex. You will notice his energy levels really pick up.  His sleeping will improve and his muscle cramps will get better from the Magnesium! Here is nice blog post that can help you Thiamine and it's many benefits. I hope this is helpful but it is not medical advice God speed on your son's continued journey I used to be him. There is hope! 2 Tim 2:7 “Consider what I say; and the Lord give thee understanding in all things” this included. Posterboy by the grace of God,  
×
×
  • Create New...