Jump to content

  • 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):

Don't Know Where To Start!

mwaters50

Recommended Posts

mwaters50 Newbie
mwaters50
Posted

I am so glad I found this forum...I just discovered it tonight!  I am hoping you all can give me sound advice as to what to do...so, here is my "story":

 

A few years ago (at least 3), I started to have serious skin issues. I broke out head to toe in a rash that was so itchy, I couldn't stop scratching. I went to 5 different doctors to get a diagnosis of dyshidrosis. The "rash" is primarily on my hands, and it is rare that I do not have any sores on my hands. I also tend to break out on the underside of my arms, into my armpits a bit. The other issue I seem to have is constant diarrhea. I get the bloated, gassy, cramping feeling, and at times, don't even think I'm going to make it to a toilet (sorry if this is TMI.) I went to my doctor (PCP) about this too, and he said I have Irritable Bowel Syndrome, and I can take Imodium as needed. So, I live with Imodium in my purse, and at times, don't leave my house. I even wake up with diarrhea lately! So, two weeks ago, my dad insisted that I start on a probiotic. He bought me one with 15B active cultures per tablet. Well, it hasn't helped at all. So today, he started urging me to see another doctor and not to accept the diagnosis of IBS.

 

What do you all think? Reflecting back, the skin issues and digestive issues seem to have started at about the same time, but the stomach has gotten worse. I don't know if I'm vitamin or mineral deficient, although I do know that my body does not absorb folic acid, so I am always deficient. OH, I must edit this to add that I am fatigued ALL THE TIME! I could never take a nap before, now I can sleep at any time of day. Not sure if that makes any difference!

 

Should I be okay with IBS as a diagnosis or should I press further? Please help! I don't just want to jump into going gluten free, as I have 3 kids and a husband and that would be really difficult to do.

 

Thanks for any advice you could give me!

 

Megan

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

Celiac.com Sponsor (A8-M):


SMRI Collaborator
SMRI
Posted

Sure sounds like Celiac with DH.  Look on the DH board (skin rash) and see if it sounds like your rash.  I would make an appointment with a GI dr that specializes in Celiac.  If you are in the midwest, I'd go to Mayo or Chicago.  Don't change your diet until you undergo testing.  They will do bloodwork and probably an endoscope to start.

mamaw Community Regular
mamaw
Posted

Hello & welcome.....

 

It  sounds like  you  have  some  nasty issues  going on...I would  suggest  a new  doctor, call your  local hospital  & tell  them  what's  going  on  & then  they can refer  some names.....or check to see  if  there  is a  local  support  group for  gluten free  in your  area  & contact  them...they  would  share  a good  doctor  for you to see...

 

And  no matter  where  I went  to see  a doctor  I  would  ask  for  bloodwork & lots of  bloodwork.... CBC

 iron panel,   B-12, Vit D, tsh, t-3 t-4 total t-3 rt-3 Freet-3 Freet-4 , total  glucose, A1C, calcium,  ferritin , lipid  panel, for  starters.......

 

Plus  please remember  not  everyone  is dx'd  celiac  many have  ncgs ( non  celiac  gluten sensitivity)  where  the  elimination  diet  would  help  to show  if  gluten  is the  culprit.... either  way the outcome is the  same  a gluten-free  lifestyle  , 365  days a year  100%....

 

I  agree  with your  Dad  you need  digestive  enzymes (digest gold is a good one) &  lots of  probiotics.....taken  correctly....I also  would be  taking a good  multi   such  as  megafood for  women....they are gluten-free  & come  from  REAL foods....

Not to discourage  you but  it  at  times takes years  to  get  a proper  dx's .....

 

It  also  would help if  you gave  your  state & even the closest  big  city  so maybe  we  could direct  you to  a  good  resourse...

 

 

mamaw

mwaters50 Newbie
mwaters50
Posted
  • Author

By the way, I live in NJ and have access to healthcare in NYC or Phili.

icelandgirl Proficient
icelandgirl
Posted

Hi Megan...sounds tough. I know that in the months leading up to my diagnosis I would wake up and have to run to the bathroom to have D. And that's such a bad feeling. ((Hugs)) to you.

Have you had any celiac testing done? If not I would request that. A full celiac panel plus a thyroid panel for sure. It certainly sounds like it could be that. Push for that testing to start. It's all just a blood draw and there's no reason for a Dr to not order it. Keep eating gluten until you get the testing...The equivalent of 1-2 slices of bread a day is recommended.

Until then, hang in there. I have a husband and 3 kids too...going gluten free isn't as hard as you think...you can do it. But get your testing done first! Take care of yourzelf!

notme Experienced
notme
Posted

are you anywhere close to hackensack?  

mwaters50 Newbie
mwaters50
Posted
  • Author

are you anywhere close to hackensack?  

I am about an hour south of hackensack, but it is totally doable...do you recommend someone out of Hackensack Medical Center? That hospital has a wonderful reputation!

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

Celiac.com Sponsor (A8-M):


mamaw Community Regular
mamaw
Posted

NCFA does a lot of things in the Philly area...you can join their mailing online & they send out updates... Alice Bash is wonderful.... We have drove from the Pittsburgh area to Philly for some of their events... I don't know of any doctors in the Hackensack area ......

Archived

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

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

  • Member Statistics

    • Total Members
      134,077
    • Most Online (within 30 mins)
      10,442
    terrificterry
    Newest Member
    terrificterry
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      Sigh. I posted this yesterday based on the Safeway website. I went back again today to their website to double check. On the page where they are selling Vanilla Bean flavor, it has a distinct Certified Gluten Free label. Other flavors on the Safeway website didn't have the gluten-free statement. Today I went into the store. None of the flavors I looked at, including Vanilla Bean, have a Gluten Free statement. Is it safe? Who knows. The ingredients are either safe or nearly safe (some have "natural flavor"). There are warnings about "contains milk and soy" but not about wheat - this implies they are safe, but again, who knows. On the other hand, every flavor I checked of their Slow Churn line of ice creams has wheat as an ingredient. 100% not safe.
    • knitty kitty
      Edy's and Dreyer's ice cream

      By knitty kitty · Posted

      Do keep in mind that many of the newly diagnosed have lactose intolerance.  This is because the villi lining the intestinal tract are damaged, and can no longer make the enzyme lactAse which breaks down the milk sugar lactOse.  When the villi grow back (six months to two years), they can again produce the enzyme lactAse, and lactose intolerance is resolved.  However, some people (both those with and without Celiac Disease) are genetically programmed to stop producing lactase as they age.   Do be aware that many processed foods, including ice cream, use Microbial Transglutaminase, a food additive commonly called "meat glue," used to enhance texture and flavor.  This microbial transglutaminase has the same immunogenicity as tissue transglutaminase which the body produces in response to gluten in people with Celiac Disease.  Tissue Transglutaminase (tTg IgA) is measured to diagnose Celiac Disease in blood tests.  Microbial Transglutaminase acts the same as Tissue Transglutaminase, causing increased intestinal permeability and inflammation.   New findings show that microbial transglutaminase may be able to trigger Celiac Disease and other autoimmune and neurodegenerative diseases.   Microbial Transglutaminase is not required to be listed on ingredients labels as it's considered a processing aid, not an ingredient in the U.S.  Microbial Transglutaminase has been GRAS for many years, but that GRAS standing is being questioned more and more as the immunogenicity of microbial transglutaminase is being discovered. Interesting Reading:  Microbial Transglutaminase Is a Very Frequently Used Food Additive and Is a Potential Inducer of Autoimmune/Neurodegenerative Diseases https://pmc.ncbi.nlm.nih.gov/articles/PMC8537092/
    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      There is a 10 year old post in this forum on Edy's and Dreyer's ice cream. The information is somewhat outdated and the thread is closed to further comment, so here is a new one. Edy's And Dreyer's Grand Vanilla Bean Ice Cream - 1.5 Quart is labeled "Gluten Free". This is a different answer than years gone by. I don't know the answer for any other flavor at this moment. On 1 May, 2026, Edy's website says: "As a general rule, the gluten in Edy's and Dreyer's® frozen dessert products is present only in the added bakery products, such as cookies, cake or brownies. We always label the eight major food allergens on our package by their common name. We recommend to always check the label for the most current information before purchasing and/or consuming a product. The exception to this rule is our Slow Churned French Silk frozen dairy dessert, which contains gluten in the natural flavors." https://www.icecream.com/us/en/brands/edys-and-dreyers/faq It seems that Edy's and Dreyer's are more celiac-friendly than they were 10 years ago. Once I found enough information to make today's buying decision, I stopped researching.
    • Aretaeus Cappadocia
      EDG 3 years ago fine, now it shows focal villous blunting,

      By Aretaeus Cappadocia · Posted

      probably not your situation @Mimiof2, but allow me to add one more to @trents list of celiac-mimics: "olmesartan-induced sprue-like enteropathy"  
    • knitty kitty
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      My dad had an Abdominal Aortic Aneurysm.  Fortunately, it was discovered during an exam.  The doctor could feel my dad's heart beating in his stomach/abdomen.  The aneurysm burst when the doctor first touched it in surgery.  Since he was already hooked up to the bypass machine, my dad survived ten more years.  Close call! Triple A's can press on the nerves in the spinal cord causing leg pain.  I'm wondering if bowing the head might have increased the pressure on an aneurysm and then the nerves.   https://gulfcoastsurgeons.com/understanding-abdominal-aortic-aneurysm-symptoms-and-causes/ Abdominal Aortic Aneurysm Presenting as a Claudication https://pmc.ncbi.nlm.nih.gov/articles/PMC4040638/
×
×
  • Create New...