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

Has Anyone Else Experienced This?

happytobeGF

Recommended Posts

happytobeGF Newbie
happytobeGF
Posted

Ok, I'm feeling like nothing I'm reading about gluten intolerance really fits. All I know is that going gluten-free helped me so much that I felt seriously HAPPY to be gluten-free, and don't miss bread at all. Can any of you identify with these symptoms?

--I had surgery and a miscarriage last summer. After this, I started having more serious stomach cramping and gas than normal. I've always been a fairly "gaseous" person, but it got worse. After Christmas, the stomach cramping got so bad that I started suspecting gluten intolerance, and went into get tested. Negative. Everything was negative. On the very, very low side of negative.

--a year ago, as a 30-year old woman, I got diagnosed with ADHD. It was like a revelation. I got medicated, and it helped. But the meds always seemed to wear off much more quickly than the docs said they should.

--I've always had weird skin problems--allergic to latex, random weird itchiness that I couldn't identify, but that didn't stay around. After I started having kids, the skin on my right hand got such bad eczema that it would crack and bleed. Steroid creams + constant lotion application helped, but was really freaking annoying.

--I've always had tons of mouth blisters "due to stress." So did my mother and grandmother.

--I've tested borderline anemic w/ every pregnancy, and iron supplements didn't seem to help that.

--The worst part was my weight. I've always had a voracious appetite. I could eat 2x as much in volume as my high-metabolism husband, and maybe ate half the fat. I could diet and exercise for months at a time and maybe lose a pound. It was so discouraging.

Well, after my blood was drawn for my test, I went gluten-free without waiting for the results to come back. (And, at the advice of a gluten-free/CF friend, stayed that way even after the tests came back negative) It only took a few days, but the stomach cramping stopped. Less than two weeks later, my hands started healing, and I'd forgotten to apply *any* creams at all. Within a month, my hand was smooth like a baby's. I started taking pictures, lol.

My ADD got easier to manage. My brain fog cleared considerably. I had more energy. My blood pressure dropped.

The BEST part was my appetite. I was suddenly eating half of what my husband was eating. All my life, I've had such crazy blood-sugar drops that my parents kept getting me tested for diabetes. It kept coming back as, "Almost, but not quite." Those *stopped.*

I've lost 10 lbs in three months. I have about 25 more to go, LOL!

I can't find anything on the internet about a gluten-intolerant person having a drop in appetite after going gluten-free---and having that be such a good thing. I've met one woman on one forum who said her *grandkids* experienced this, but that just isn't quite authoritative enough for me, lol. :) Has anyone heard of this type of result before?

Thanks so much,

HappytobeGF

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

What's that old saying? "If it walks like gluten intolerance and it poops like gluten intolerance, then its probably gluten intolerance (or Celiac)"

The eating less thing: When you guts are damaged and unable to take in the nutrients your body craves, it might trigger you to eat more.

Welcome!

ravenwoodglass Mentor
ravenwoodglass
Posted

Since celiac can impact nutrient absorption our bodies can signal us that we are constantly hungry because it wants more nutrients.

It sounds like you have seen a great deal of improvement on the diet. I would stick with the diet.

etta694 Explorer
etta694
Posted

The eating less thing: When you guts are damaged and unable to take in the nutrients your body craves, it might trigger you to eat more.

Welcome!

Since celiac can impact nutrient absorption our bodies can signal us that we are constantly hungry because it wants more nutrients.

Yes, this has been my experience... before I couldn't stop eating and I was always craving food. Now I am satisfied - and less interested in food.. which has led to some unhealthy eating habits too, thus I haven't lost any weight.

txplowgirl Enthusiast
txplowgirl
Posted

Hi Happytobegf,

I've always been heavy even as a kid, I had so many issues like yours plus a lot more. I was always hungry but couldn't eat lot, Everybody said I ate like a bird.

But since i've been gluten-free I eat way more than I use to but i've lost 45 lbs and I very rarely get hungry now, isn't that backwards or what? Lol

happytobeGF Newbie
happytobeGF
Posted
  • Author

Thank you, thank you, thank you. It's so good knowing that I'm not making this up. And also, thank you for posting the little "stories" of your diagnoses and mis-diagnoses at the bottom. It just makes us newbies feel a ton better to know you've walked this road before us. :)

mushroom Proficient
mushroom
Posted

As I read through your initial post, I couldn't find a single thing in there that I would not possibly attribute to gluten intolerance.

Pregnancy often triggers.

ADHD is a common symptom to clear up gluten free

Celiac is notorious for skin problems - eczema, psoriasis, dermatitis herpetiformis, dry flaky skin, keratosis pilaris, etc., etc.

Apthous ulcers in the mouth

Anemia

Inability to lose weight...

Have I missed anything? Oh yes, the gaastrointestinal symptoms. :D

I would call you a pretty classic case. There's nothing in there that DOESN"T fit.:rolleyes:

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

Celiac.com Sponsor (A8-M):


UpbeatPete Explorer
UpbeatPete
Posted

So the Keratosis on my arms can be from Celiac Disease? What if I've had the keratosis my entire life, or as long as I can remember?

ravenwoodglass Mentor
ravenwoodglass
Posted

So the Keratosis on my arms can be from Celiac Disease? What if I've had the keratosis my entire life, or as long as I can remember?

Some of us can have skin issues for a very long time before other celiac symptoms show up. Once you have been gluten free for a while if the KP disappears you will know it is gluten related.

Archived

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

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


  • Member Statistics

    • Total Members
      131,899
    • Most Online (within 30 mins)
      7,748
    dcarter1682
    Newest Member
    dcarter1682
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

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



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • trents
      New (possible) celiac diagnosis

      By trents · Posted

      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      New (possible) celiac diagnosis

      By Judy M · Posted

      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      Patiently Waiting to See Results

      By Scott Adams · Posted

      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      Gluten free beer ?

      By Scott Adams · Posted

      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Patiently Waiting to See Results

      By trents · Posted

      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
×
×
  • 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.