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

Not Celiac


Gerri

Recommended Posts

Gerri Explorer

I suspected that I would not be diagnosed with celiac. The Gastro doctor said likely just Gluten Intolerant, and to stay away from glutten if it makes me feel better.

She confirmed Acid Reflux with inflammation, which she seen on the way through with the scope. Acid reflux I've had for over 30 years.

She said I have an Hiatus Hernia. (this is new)

She confirmed I have Irritable bowel Syndrome, which I have already been diagnosed with, 30 years ago.

She said the major bloating is from my diabetis (which is supposedly not controlled), which no doctor is putting me on medicine for. This I do not believe.

Hugs

Gerri


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



Celiac.com Sponsor (A8-M):



nora-n Rookie

Wwhat other tests did you have, and how many biopsies, and what d the report say, and what are your symptoms, and are you still on gluten?

nora

ravenwoodglass Mentor
I suspected that I would not be diagnosed with celiac. The Gastro doctor said likely just Gluten Intolerant, and to stay away from glutten if it makes me feel better.

She confirmed Acid Reflux with inflammation, which she seen on the way through with the scope. Acid reflux I've had for over 30 years.

She said I have an Hiatus Hernia. (this is new)

She confirmed I have Irritable bowel Syndrome, which I have already been diagnosed with, 30 years ago.

She said the major bloating is from my diabetis (which is supposedly not controlled), which no doctor is putting me on medicine for. This I do not believe.

Hugs

Gerri

After all the hell you went through it must be frustrating to hear a report like the one she gave you. As sick as you were from the challenge it does not surprise me that she found a new hernia, gluten reactions can be really forceful. Hopefully now that you are through with them torturing you healing can begin.

Gerri Explorer
Wwhat other tests did you have, and how many biopsies, and what d the report say, and what are your symptoms, and are you still on gluten?

nora

The GASTRO took 3 biopsies I believe. She didn't give me a copy of the report. She pretty much brushed me off, and told me to loose weight. I had to get her to go over her report to find out about the hernia, and my inflamed esophogus. (Oh, she did say I had GERDs, and IBS again.)

I lost 10 lbs right after going off gluten, and haven't loss any since. I eat like a bird, definitely not hungry.

Definitely not on gluten. I having more Lupus like symptoms. The criteria for Lupus, to be diagnosed with lupus is 4 out of 11, and I have 10. My doctor won't diagnose me with Lupus unless my ANA is positive, and as of 4 years ago it was negative.

My friend tends to think, I have adrenal gland fatigue, which is causing thyroid problems. My family doctor says NO!!!

I off gluten indefinitely now, GASTRO said it will help with the IBS :)

Hugs

Gerri

Gerri Explorer
After all the hell you went through it must be frustrating to hear a report like the one she gave you. As sick as you were from the challenge it does not surprise me that she found a new hernia, gluten reactions can be really forceful. Hopefully now that you are through with them torturing you healing can begin.

Hi

If I am indeed not Celiac, then the hell I went through was because of severe increase in my allergy to sulfites, which is in all gluten products. When I increased the gluten bread, pasta, and most baked gluten products, I increased the sulfites. I have had anaphalatic shock from sulfites. When I stopped the gluten, I also decreased the sulfites, and loss ten lbs.

The GASTRO, believed I was only gluten intolerant, also said that by staying on the gluten diet it will help with the IBS. The GASTRO, wants me to lose so much more weight. My friend thinks I have Thyroid problems. She bets her life on it. If I have Thyroid problems, which my doctor won't check out, it might be the reason why I can't lose weight.

The Lupus symptoms I am dealing with has increased dramatically. It seems my allergies to sulfa, sulfates, sulfites, sulfur and derivitives continues to increase. Most vegetables have natural sulfur in them. I am feeling worse daily. I don't know what to do. The stomach pain last night woke me out of a sound sleep. Only my hands, arms, face and eyes are now swollen. GERDS is up and down. My elbow, and back pain, continues to be bad.

I was looking at the bottom of your post. I have many of your misdiagnoses.

Hugs

Gerri

ShayFL Enthusiast
If I have Thyroid problems, which my doctor won't check out, it might be the reason why I can't lose weight.

You do not have to be a slave to your doctor. You can find a new one. Or you can order your own thyroid tests. They arent very expensive. www.healthcheckusa.com usually has very good prices. You dont need a doctor to order the tests from them. Even if you have to sacrifice something you normally buy to afford the tests, it will be worth it.

I got my own tests and took them to my doctor with a copy of the new lab ranges for TSH. After 12 years of hell I finally got treatment for hypothyroid. It changed my life!!

nora-n Rookie

There are some people here who are very intolerant of sulfites, one is Rachel in the OMG thread here in the other food intolerance folder. The thread started with corn, but corn was not the issue, but sulfites and salicylates. And it has to do with the methylation cycle, with detoxification. When something is broken in the cycle, it dose not work properly and you feel sick when you get too much of something that clogs it all up. Like sulfites and sulfur in some cases, depending on what is broken. You can pop over and compare notes.

nora


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



Celiac.com Sponsor (A8-M):



confused Community Regular

I was going to recommend what nora did. You should pop on over to the omg thread.

paula

Fabulous40 Newbie

Gerri -

Are you seeing an MD or a DO?

I switched from a medical doctor to a doctor of osteopathy because my medical doctor wouldn't diagnose me with anything and just gave me LOTS of medicines for each individual issue. I was gaining weight while exercising and eating properly (I thought). I had lots of gastro issues, high blood pressure, high cholesterol, migraines, hot flashes, night sweats, and depression. I really thought I was going through menopause, although I'm only 40, and I felt like crap all the time. I was taking Nexium for acid reflux, Zocor for cholesterol, Maxalt for migraines, Celexa for depression, and Cozaar for high blood pressure, along with a whole host of supplements for the menopause-like symptoms.

My DO figured out I was insulin resistant (which was causing menopause-like symptoms), and he suggested I delete all gluten products from my diet (because I'm type O blood and because of my gastrointestinal issues). He suggested cinnamon and tumeric for glucose control, and acai for general well-being. He also suggested acupuncture. I have lost only 7 pounds (slowly), but I feel so much better. My DO has taken me off of all my meds except the blood pressure medicine, and my cholesterol and insulin seem to be under control. I don't have the migraines, hot flashes or night sweats anymore, and my mood has increased dramatically.

I guess my point is - find another doctor for another opinion if you can afford it. Look for a doctor of osteopathy because they treat the whole person, not just individual symptoms. I know you are miserable, but perhaps the right doctor will make the right diagnosis and you'll get your body back under control.

Best of luck to you.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,930
    • Most Online (within 30 mins)
      7,748

    Mhp
    Newest Member
    Mhp
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • 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

    • AnnaNZ
      I forgot to mention my suspicion of the high amount of glyphosate allowed to be used on wheat in USA and NZ and Australia. My weight was 69kg mid-2023, I went down to 60kg in March 2024 and now hover around 63kg (just after winter here in NZ) - wheat-free and very low alcohol consumption.
    • AnnaNZ
      Hi Jess Thanks so much for your response and apologies for the long delay in answering. I think I must have been waiting for something to happen before I replied and unfortunately it fell off the radar... I have had an upper endoscopy and colonoscopy in the meantime (which revealed 'minor' issues only). Yes I do think histamine intolerance is one of the problems. I have been lowering my histamine intake and feeling a lot better. And I do think it is the liver which is giving the pain. I am currently taking zinc (I have had three low zinc tests now), magnesium, B complex, vitamin E and a calcium/Vitamin C mix. I consciously think about getting vitamin D outside. (Maybe I should have my vitamin D re-tested now...) I am still 100% gluten-free. My current thoughts on the cause of the problems is some, if not all, of the following: Genetically low zinc uptake, lack of vitamin D, wine drinking (alcohol/sulphites), covid, immune depletion, gastroparesis, dysbiosis, leaky gut, inability to process certain foods I am so much better than late 2023 so feel very positive 🙂    
    • lehum
      Hi and thank you very much for your detailed response! I am so glad that the protocol worked so well for you and helped you to get your health back on track. I've heard of it helping other people too. One question I have is how did you maintain your weight on this diet? I really rely on nuts and rice to keep me at a steady weight because I tend to lose weight quickly and am having a hard time envisioning how to make it work, especially when not being able to eat things like nuts and avocados. In case you have any input, woud be great to hear it! Friendly greetings.
    • Hmart
      I was not taking any medications previous to this. I was a healthy 49 yo with some mild stomach discomfort. I noticed the onset of tinnitus earlier this year and I had Covid at the end of June. My first ‘flare-up’ with these symptoms was in August and I was eating gluten like normal. I had another flare-up in September and then got an upper endo at the end of September that showed possible celiac. My blood test came a week later. While I didn’t stop eating gluten before I had the blood test, I had cut back on food and gluten both. I had a flare-up with this symptoms after one week of gluten free but wasn’t being crazy careful. Then I had another flare-up this week. I think it might have been caused by Trader Joe’s baked tofu which I didn’t realize had wheat. But I don’t know if these flare-ups are caused by gluten or if there’s something else going on. I am food journaling and tracking all symptoms. I have lost 7 pounds in the last 10 days. 
    • trents
      Welcome to the forum, @Hmart! There are other medical conditions besides celiac disease that can cause villous atrophy as well as some medications and for some people, the dairy protein casein. So, your question is a valid one. Especially in view of the fact that your antibody testing was negative, though there are also some seronegative celiacs. So, do you get reactions every time you consume gluten? If you were to purposely consume a slice of bread would you be certain to develop the symptoms you describe?
×
×
  • 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.