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):

Help, Please!?

angelawest

Recommended Posts

angelawest Newbie
angelawest
Posted

Im miserably sick, have run out of answers and options, and am in desperate need of advice?

I started suffering from 'Chronic Fatigue Syndrome' and 'Fibromyalgia' 10 years ago w/out any doctor being able or willing to tell me what the 'cause' was. My stomach always hurt, and hurt worse when my condition grew worse, especially under my left rib cage area (even looks swollen there). Doctors just then told me I had IBS~ that it often goes along with CFS/FM. After giving up on doctors, I finally took maters into my own hands and tried anything 'natural' that I could: supplements/herbs/homiopathic remedies, acctupuncture, chelation, colonics, toxic/yeast cleansing, and an organic allergen free diet (this included the elimination of gluten!). After many months of this crazy regimen, I started to feel better (not 100 percent, but functioning again). Well, the costs. time, & energy of all that took a toll, and eventually I went back to my normal ways... not even sure what specifically, of all the things I had tried, or if a combinations of things, helped me feel better... and I did remain 'better'' (never 100%~ but able to function in life again, and even work) for a few years.

Several years later, I am debilitatingly sick again. Had to quit my job. Everything hurts, I'm extremely fatigued, weak & dizzy, Im having terrible heart palpitations, I have a rash on my face (cheeks), and my stomach hurts/is bloated worse than it's ever been (feels & looks extremely inflamed/swollen), even my rectum/butt hurt (I know that's gross, but true =P), ETC. This time, I've been finally been diagnosed with 'real/treatable' issues: Autoimmune Hashimoto's Thyroiditis, Gastroparesis, Small Intestinal Bacterial Overgrowth (SIBO), and diverticulosis. It would make sense that I'm sick because of 'these' conditions, right? It would make sense that my stomach hurt, right? BUT~ the treatments for each of these conditions don't seem to be helping! Is there something more?!?!

I've had blood testing for celiac's many times, always negative! I demanded an endoscopy to rule out celiac, non the less (knowing there are many false negative tests.) My endoscopy showed "inflammation" in my stomach and duodenum and polyps in my stomach.... but normal villi. My GI insists that I do NOT have celiac and that the inflammation /polyps are a result of the gastroparesis and SIBO. But then, why am I not getting better?!

My endocrinologist can't help me anymore, my Rheumatologist insists I simply have FM, and my MD insist's it simply CFS (even questioned the Hashimoto's because my T4 levels deceivingly looked normal... I had referred MYSELF to the endo out of desperation). I've now referred myself to a Lyme Disease specialist (I'll have to pay out of pocket~ my insurance won't cover this doctor). as a last resort since I seem to have no where else to look anymore. BUT, AM I LOOKING IN THE WRONG PLACE??

I DON'T TRUST DOCTORS AT ALL ANYMORE! And, feel as if I'm laying here, dying slowly, and no one is willing to help me any more!

Could I have still have Celiac's with a biopsy result of 'normal villi, but inflammation/polyps"?? Is there any other type of testing that can be done to let me know the truth of whether or not I do have Celiacs??

I'm desperate to get my life back!

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

Celiac.com Sponsor (A8-M):


mommida Enthusiast
mommida
Posted

You have been diagnosed with Hashi's auto-immune thyroid disease.

There is enough evidence to show people with an auto-immune disease have a positive result to better health on a gluten free diet.

If you are done with testing, start the diet. Keep a food journal. Your body's response to the diet is your scientific test. The food journal can help you track down hidden gluten and other food intolerances.

Your gluten issue may get a label of intolerance, but it doesn't mean that it makes you less sick when you eat it.

eatmeat4good Enthusiast
eatmeat4good
Posted

God, what a nightmare you have been through.

Yes, you could still have Celiac with normal appearing villi.

Just like you can have Hashimoto's with a normal appearing T4.

Since you don't test positive for Celiac, all you can do is go gluten free and I mean strictly so.

If you are sensitive to gluten, then you will be miserable with any consumption of it at all..including traces of it.

I ran the course of Dr.'s too.

I don't have Fibromyalgia after all.

Nor IBS, fungus, CFS, Migraine, Depression, Anxiety, Stomach pain, Digestive Problems,D, Balance issues, Brain Fog...it all resoved for me...without Dr. intervention.

I'm one year gluten free and I feel better all the way around.

The rash took one year to heal.

If that is DH, many with DH do not test positive on the intestinal biopsy and yet they are at higher risk of intestinal cancers associated with Celiac. DH is Celiac. You could try to get a biopsy of the rash on your cheeks.

Barring that, you have nothing to lose and everything to gain by going gluten free.

I lived a nightmare too. But it is over now.

I wish you the best and hope you will try strict gluten free no matter what the Dr.'s say.

It is good for anyone with auto-immune disease. And you may indeed have DH. Look at the DH forum and see if your rash responds to gluten and iodine free. Many Dermatologists don't recognize DH.

Archived

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

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

  • Member Statistics

    • Total Members
      134,086
    • Most Online (within 30 mins)
      10,442
    Joseph01
    Newest Member
    Joseph01
    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...