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):

This Site May Change My Life!

Jmza

Recommended Posts

Jmza Newbie
Jmza
Posted

I am no doctor.. but I have definitely seen my fair share of them since I was a little girl. I was diagnosed with IBS a few years ago and told to "eat more fiber". That has never sat well with me, especially considering I eat plenty of fiber (in fact, it makes things worse for my constipation), I've tried probiotics and those intestinal muscle relaxers.. none of which have worked. I've also tried logging food, looking for combinations or patterns.. NOTHING. Well.. I never thought about gluten!

I just made an appointment with a new GI doctor I found listed on this site, hoping he will be willing to run the tests I need to rule this out or confirm celiac disease is my ailment. Here's a bit of my track record:

As a little girl, I had very bad constipation, to the point where it would hurt so bad to go, that I refused to try. Doctors recommended intestinal mineral oil and that seemed to help.

A little later, still a young girl, I developed a "fungus-like" or "eczema-like" rash on my hands, which migrated to my feet. I continued to have this rash on my feet for years. Doctors were puzzled and gave me cortisone cream for the itch. I itched until I was raw =(. Eventually, it just sort of got better? No real reason for its departure.. but I occasionally have a dime sized recurrance on my feet, that goes away pretty quickly. After reading this forums, I looked up DH and I am blown away! It's identical!!

I suffer, almost daily, with horrible bloat. Once I feel bloat, I can't eat anything until it goes away, or else it gets worse. It literally feels like I'm expanding my insides to their max.. and most days I have to leave work because of the pain. I also don't go to the bathroom regularly at all. I went a week and a half constipated and then spent a day in the bathroom, with D.

My periods have never been regular, ever since I can remember. I cannot actually predict when it will come.

I suffer with bad headaches, and have had my brain scanned because of the frequency. The end result was the doctor telling me to "drink more water". I drink A LOT of water.

I've never been allowed to donate blood, even though I try every time, due to low iron. When I get tested for anemia, the doctors say I am borderline. It never gets better, no matter how much iron I attempt to take in.

On the flip side, I am not thin and don't "look" unhealthy. But I have been getting sick constantly for most of my life. I always have canker sores in my mouth, had unexplained bloody UTI's as a child, and even contracted shingles at 16. The doctors feared lupus or HIV, but all tests came back negative. Soooo I've sort of been hanging out thinking this is just what life is supposed to be like... Until I found this site the other day. I read an artcle about someone with gluten intolerance. I had never really heard of it, and certainly not heard of Celiac. I was thinking it would be a great idea to atleast rule gluten out, but then I saw the pics of DH and I'm convinced! I have an appoint on the 17th with the GI.. I wish I didn't have to continue a gluten diet until after tests.. I am very anxious to see if my symptoms go away. I can't even imagine what that's like!

Thanks to all for posting on here. Hopefully I get some answers soon, but this is the closest thing I've found yet.

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

Celiac.com Sponsor (A8-M):


squirmingitch Veteran
squirmingitch
Posted

Your symptoms certainly fit celiac symptoms.

It is a falsehood that all celiacs are rail thin & look unhealthy. Some of us are rail thin & look healthy. Some of us are downright fat & either look healthy or look unhealthy. Some are just overweight. We've had discussions about this before --- with the reasoning being proffered that malabsorbtion can as easily make you skinny as it can result in making fat cells rather than the food being utilized as it should be. There are lots & lots of celiacs on here who were told by doctors they couldn't possibly have celiac disease b/c they were too fat to be celiac. Shame on those doctors!mad.gif

As badly as you want to get going on the gluten-free diet; just hang in there & keep eating it until ALL testing is done.

It's wonderful that you found a doc listed from this site! Since you have dh then you stand more of a chance of the blood returning a false neg. than if you didn't have dh. Just be aware of that.

Welcome to the board!

nvsmom Community Regular
nvsmom
Posted

Your symptoms arevery much like mine: C and stomachaches since a small girl, bloat to the point where it hurts quite a bit and you get that lovely pregnant look, fatigue, aches and pains, migraines half the time, irregular periods... Celiac dx and going gluten-free definitely helped me with most of it but I had my TSH tested, because celiacs frequently have hypothyroidism, and I have an underactive thyroid; probably Hashimoto's. That seems to be the cause of my C, irregular and heavy periods, some of the migraines, and aches and pains.... You might want to get your thyroid checked too.

Hope you feel well soon once you are on the gluten-free diet. Good luck!

shadowicewolf Proficient
shadowicewolf
Posted

This site helps me a lot as well.

Get tested, stay on gluten until all the testing has been done, then regardless of results try gluten free afterwards.

kittty Contributor
kittty
Posted

I suffer with bad headaches, and have had my brain scanned because of the frequency. The end result was the doctor telling me to "drink more water". I drink A LOT of water.

My doctor said that eating more protein would cure my headaches. lol. I wonder sometimes if they pick their answers out of a hat.

shadowicewolf Proficient
shadowicewolf
Posted

Protien does help with headaches some. But it does not make them go away.

GottaSki Mentor
GottaSki
Posted

Welcome!

Squirmy is spot on - we come in all shapes and sizes - unfortunately many in the medical community were taught that Celiac Disease is a childhood disease that must include being underweight or short in stature - looking healthy can be the most frustrating thing in the doctor's office - especially when you have years of "normal" blood tests. The only abnormal blood test I had for nearly three decades was low iron. Glad you found the tests you need on your own - it took far too long for me.

Make sure they run the full celiac blood panel and check for other nutrient deficiencies: Bs, D, K, Calcium, Magnesium, Copper and Zinc - nutritional deficiency is another strong indicator of celiac.

Good luck to you :)

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

Celiac.com Sponsor (A8-M):


1desperateladysaved Proficient
1desperateladysaved
Posted

I hope you will get your tests soons and will get off to a non gluten trial diet. I hope this will change your life.

Diana *** -here are some flowers for you ***

Archived

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

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

  • Member Statistics

    • Total Members
      134,084
    • Most Online (within 30 mins)
      10,442
    Melvac
    Newest Member
    Melvac
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • 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...