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

HELP! I'm a newbie and I need advice!

blueyes08

Recommended Posts

blueyes08 Newbie
blueyes08
Posted

Hi All,

I am a newbie to gluten free and also to this forum.  I am not diagnosed Celiac but do believe I am gluten sensitive.  With that being said I also want to note that when I went for the celiac blood test my doctor had me fast beforehand because he was testing for other things as well.  I fasted for 16 hrs total prior to the blood test so I don't know if results would be different had I not fasted.  About 2 years ago I started with a bloating issue but did not realize it was a true issue until the last year when the bloating became sever and relentless!  I turned to my doctor who ran several test (all negative for various things).  I started asking around if anyone has dealt with issues similar to mine and several people suggested I may be gluten sensitive.  I researched it and found several of the symptoms fit me to the "T".  Brain fog, bad fatigue, stabbing stomach pains, sever bloating, joint pains and constipation.  About 3 weeks ago i decided to go gluten-free.  With in 2 days my stomach pains and bloating seemed to disappear.  I also found I was no longer constipated.  However, the last few days I noticed my constipation is back as well as the bloating and stomach pains.  Although, not as sever as prior to going gluten-free but nonetheless it's still back.  My question is, is this normal????  I read that it can take several months for gluten to get out of your system but are flareups normal during this process?  I have been extra vigilant  about cross contamination.  I don't know if Im just losing my mind or what but all I know is the symptoms are coming back and so is my depression.  I just want to feel like my old self again and to know I am on the right track.  Any advice would be greatly appreciated!!! 

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

Celiac.com Sponsor (A8-M):


RMJ Mentor
RMJ
Posted

A 16 hour fast will not affect antibody levels, but I hope you were tested before you went gluten free three weeks ago?

blueyes08 Newbie
blueyes08
Posted
  • Author

yes I was tested prior to going gluten-free.

cyclinglady Grand Master
cyclinglady
Posted

Welcome.

Did you know that the celiac blood tests require that you eat gluten daily for 8 to 12 weeks?  If you even stop for two weeks, it can impact your blood test (s) results?  Fasting for 16 hours is not necessary, but I understand your doctor probably was testing your blood glucose or cholesterol.   Did your doctor discuss remaining on gluten with you?  

It might be helpful for you to do more research.  You might want to consume gluten again to get an official diagnosis that also requires an endoscopy with four to six biopsies that confirms intestinal villi damage.

One of the best celiac websites is the University of Chicago.  

Open Original Shared Link

Good Luck!

blueyes08 Newbie
blueyes08
Posted
  • Author

Thank you and no I did not know all of that.  I was consuming gluten prior but daily I am not sure.  I wasn't really thinking gluten as a problem so I didn't keep track of how much or how often I was eating it.  I will do more research.  

cyclinglady Grand Master
cyclinglady
Posted

Did your doctor advise you to go gluten free before all testing is complete?  If your blood tests for celiac are positive (any of them), the next step is usually a referral to a GI doctor who can perform an endoscopy. 

Celiac Disease is an autoimmune disorder like Lupus or Multiple Sclerosis.  The difference is that doctors know that gluten triggers the autoimmune response that can last for days or months.  Other autoimmune disorders do not know what triggers the response.  

blueyes08 Newbie
blueyes08
Posted
  • Author

No my doctor didn't advise me on anything really.  After the blood test was negative he didn't set up any other tests or follow ups.  Unfortunately our insurance isn't the best and I already have several other medical bills im paying so right now I can't really afford to get the endoscopy done.  Right now Im just winging it on my own.  All I know is that I am desperate to feel better!

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

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted

I am sorry if I sounded short and cross :(.  I can not believe that doctors do not take the time to research and council prospective celiac patients.   My husband's GP and my old allergist advised him to go gluten free some 14 years ago.  It worked.  He's fine.  But it took a long time and a lot of cheating for him to  really realize that that gluten was impacting him.  Now there's no way he'd go back on gluten for 12 weeks to get an official diagnosis.  He will tell you that I have had it a lot easier in terms of medical, family and friends supporting me.  They all believe me....it's "not in my head".  

 The good news is that your doctor sounds like he at least ran the celiac tests for you.  So many of our members have struggled to find a diagnosis for all their symptoms.  It is so frustrating!  So, please forgive me for being so abrupt!  

If you do find that you have celiac disease, it will take lots of time and patience to heal (months to years).  It will happen!  If all tests are negative, you can try the gluten free diet.  It may help! :) 

cyclinglady Grand Master
cyclinglady
Posted
34 minutes ago, blueyes08 said:

No my doctor didn't advise me on anything really.  After the blood test was negative he didn't set up any other tests or follow ups.  Unfortunately our insurance isn't the best and I already have several other medical bills im paying so right now I can't really afford to get the endoscopy done.  Right now Im just winging it on my own.  All I know is that I am desperate to feel better!

So, going gluten free might be worth a shot!  :)  Please read our Newbie 101 section under the "Coping" section for valuable tips like cross contamination (which you know about) and hidden sources of gluten (lipstick, lip balm, shampoo -- in case you swallow, etc., kissing someone who just ate gluten....) 

Give it six months though.....Good luck and I hope you feel better soon! 

 

 

blueyes08 Newbie
blueyes08
Posted
  • Author

It's ok I understand the frustration and it didn't come across that way lol.  I am sorry that your husband had such a hard time with it all, I know it cant be easy.  I do like my doctor but i also think he passes things off quickly too.  Im so desperate for a solution I was willing to try just about anything!  When some friends who  deal with celiacs suggested gluten-free I was willing to give it a try.  I honestly feel better!  Most of my symptoms I have been dealing with have started to subside.  I don't always trust doctors but I also don't like to self diagnose either.  From what I have read there is no concrete test to prove gluten sensitivity other then a gluten-free diet.  If you know of anything that might be helpful in this area i would appreciate any advice.  Unfortunately trying to get doctors to hear me and not pass me off is a challenge.  I do plan on seeing a GI doctor anyway on my own in hopes of getting somewhere with someone else.

frieze Community Regular
frieze
Posted

my thoughts would be CC.  keep a food diary and read all labels, don't eat what others cook, unless it is one of the celiacs you know, and can trust.

blueyes08 Newbie
blueyes08
Posted
  • Author

Thank you for all your help!

Archived

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

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


  • Member Statistics

    • Total Members
      131,137
    • Most Online (within 30 mins)
      7,748
    Kristen Wolf
    Newest Member
    Kristen Wolf
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Jenny (AZ via TX)
      Does Dailymed.nlm.nih.gov site have filters for gluten?

      By Jenny (AZ via TX) · Posted

      Thank you both so much!
    • Bev in Milw
      Does Dailymed.nlm.nih.gov site have filters for gluten?

      By Bev in Milw · Posted

      Reading labels at dailymed.com is simpler if you’re familiar w/ gluten-free list of inert ingredients (aka ‘excipients’  allowed by FDA.      www.gluten-free.com has that list & I’ve included It’s below…. Tricky ones for me are the “4 D’s“ because names are similar. These 2 are gluten-free by ‘legal’ definition— •Dextrans - Partially hydrolyzed corn or potato starch. •Dextrose - Powdered corn starch. Other 2 need to be questioned. (Maybe ok for isolated 7-10 day Rx,   antibiotic?,  but gluten-free status needs to be verified for long term / daily use for chronic condition, like thyroid or BP meds.)   These are : •Dextrates - Mix of sugars resulting from the controlled enzymatic hydrolysis of starch. •Dextrins - Result from the hydrolysis of starch by heat or hydrochloric acid (from corn).  It can also be obtained from wheat, rice or tapioca.  (Maltodextrin on US labels MUST be corn so gluten-free.) Technically, ‘Starch’ on USDA ‘food’ labels in US must be from corn, & if not, the source must be identified.   In drugs,‘ Pregelatinized starch’ & ‘Sodium starch glycolate’ can also be from potato, rice, OR wheat.  Wheat is more likely to be found in products made outside of US (Europe) where corn is not the major(readily available & least costly) crop.     Hope this helps even though  learning sources of some gluten-free ones may make them less appealing. (And while the “Read every label, every time” for gluten is a pain, I’ve learned there are worse things than celiac dx—Allergy to corn would be at top on my list!)          Bev in Milwaukee From www.gluten-free.com EXCIPIENT INGREDIENTS IN MEDICATIONS  Aspartame - An artificial sweetening agent derived from aspartic acid. Aspartic Acid - A crystalline amino acid found naturally in sugar beets and sugar cane.  Benzyl alcohol - Made synthetically from benzyl chloride which is derived from toluene (a tar oil). Cellulose - (ethylcellulose, methylcellulose, hydroxymethylcellulose, hydroxypropyl, microcrystalline) – Obtained from fibrous plant material (woody pulp or chemical cotton). Cetyl alcohol - Derived from a fat source (spermaceti, which is a waxy substance from the head of the sperm whale). Croscarmellose sodium - An internally cross-linked sodium carboxymethylcellulose for use as a disintegrant in pharmaceutical formulations.  Comes from wood pulp or cotton fibers to form carboxymethylcellulose.  It contains no sugar or starch. Dextrans - Partially hydrolyzed corn or potato starch. Dextrates - Mix of sugars resulting from the controlled enzymatic hydrolysis of starch. Dextrins - Result from the hydrolysis of starch by heat or hydrochloric acid (from corn).  It can also be obtained from wheat, rice or tapioca. Dextrose - Powdered corn starch. Fructose - Obtained naturally from fruits or honey; hydrolyzed cane or beet sugar. Gelatin - Obtained from the skin, white connective and bones of animals (by boiling skin, tendons, ligaments, bones, etc with water). Glycerin - Historically, glycerin (also known as glycerol), was made the following ways: -  Saponification (a type of chemical process) of fats and oils in the manufacturing of soaps -  Hydrolysis of fats and oils through pressure and superheated steam -  Fermentation of beet sugar molasses in the presence of large amounts of sodium sulfite   Today its is made mostly from propylene (a petroleum product) Glycerols - Obtained from fats and oils as byproducts in the manufacture of soaps and fatty acids (may also be listed as mono-glycerides or di-glycerides). Glycols - Products of ethylene oxide gas. Hypromellose – A brand of hydroxypropyl methylcellulose (see cellulose). Iron oxide (rust) - Used as a coloring agent. Kaolin - A clay-like substance. Lactilol - Lactose derivative; a sugar alcohol. Lactose - Also known as milk sugar, is used in the pharmaceutical industry as a filler or binder for the manufacture of coated pills and tablets.   Commercially produced from cow's milk. Maltodextrins - A starch hydrolysate that is obtained from corn in the United States but can also be extracted from wheat, potato or rice. Mannitol - Derived from monosaccharides (glucose or mannose). Methyl Paraben – Comes from the combination of denatured wood alcohol and benzoic acid (benzoic acid occurs naturally in cherry bark, raspberries, tea, anise and cassia bark).  Polysorbates - Chemically altered sorbitol (a sugar alcohol). Polyvinyl alcohol – A water soluble synthetic alcohol (synthesized by hydrolysis of polyvinyl acetate). Povidone (crospovidone, copovidone) - synthetic polymers  Pregelatinized starch - A starch that has been chemically or mechanically processed.  The starch can come from corn, wheat, potato or tapioca. Shellac - A natural wax product used in tablet or capsule coating. Sodium lauryl sulfate – A derivative of the fatty acids of coconut oil. Sodium starch glycolate - Sodium salt of carboxymethyl ether of starch. Usually from potato but can be from corn, wheat or rice. Stearates (calcium, magnesium) - Derived from stearic acid (a fat; occurs as a glyceride in tallow and other animal fats and oils, as well as some vegetables; prepared synthetically by hydrogenation of cottonseed and other vegetable oils). Sucrose - Sugar also known as refined sugar, beet sugar or cane sugar. Titanium dioxide - Chemical not derived from any starch source used as a white pigment.  Triacetin – A derivative of glycerin (acetylation of glycerol). Silcon dioxide – A dispersing agent made from silicon.  
    • NoriTori
      Celiac symptoms but negative endoscopy and antibody test + family history of gastro problems

      By NoriTori · Posted

      @Scott Adams  Sure, Any and all information is welcome. Also the only was to convince my family to get tested is to get tested myself and conclusive answers. Very stubborn lot.  
    • trents
      Blood results

      By trents · Posted

      Understood. It's very anxiety-provoking when you don't know what you are dealing with and don't know if you are attacking it correctly.
    • Heatherisle
      Blood results

      By Heatherisle · Posted

      I have heard of NCGS, but everything is just so confusing!!! Just unsure of things as her EMA test was negative but TTG was positive @19u/ml(lab range 0.0-7.0).Apparently she also has occasional bubble like blisters in between her fingers, don’t know if that’s significant. She is triallling gluten free as suggested by the gastroenterologist after her endoscopy. Keep getting different answers when typing in her symptoms etc. Some sites say it can be possible to have coeliac, even with a negative EMA . It’s so frustrating and her anxiety levels are through the roof. I know she’s hoping it’s coeliac which is weird I know!!! But if it’s not it just means more tests. Sorry to ramble on!!!
×
×
  • Create New...