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

Help...

nothing but nicole

Recommended Posts

nothing but nicole Apprentice
nothing but nicole
Posted

Ok, so I posted something before about diagnosis. Now I need some more advice. I will go over everything again to just clarify. I have had an upper endoscopy with biopsy, however I do not know what the biopsy results were since they took them to test for bacteria that could have caused the ulcer that I was told that I have. At the same time they did a flexible sigmoidoscopy (lower colonoscopy) and told me that I have hemorrhoids and my colon basically looks like bubble wrap. Again they did not do a biopsy of anything there but the papers I have say that there is abnormal mucuos in my lower intestinal tract. I have had my vitamin levels ran and the dr send me to have the IBD serology blood test ran, apparently this can differentiate between IBD and celiac disease? My doctor based him telling me that he thinks that I have celiac on the results of the upper endoscopy and flexible sigmoidoscopy, however I have to have a full colonoscopy tomorrow (not enjoying the prep mind you). I have not heard anything from him about the blood tests and I am slightly worried about misdiagnosis. I do have family history though, I have an older sister that was diagnosed about two years ago, however she has down syndrome and I was reading on one of the many websites about celiac that the disease is common amongst people with down syndrome and autism. My other sister's doctor literally laughed at her when she called to ask for genetic testing. How horrible most doctors can be. I am fairly young, live with just my sister almost 2000 miles away from my parents so my mom cant really be here to hold my hand. I have no idea what to ask the doctor, what my next steps are if they find I don't have Crohns (that is why they are doing the colonoscopy) or Celiac. I know I need to ask the doctor about my blood tests and biopsies but I dont really know how and I worry that the doctor will have no answers for me. I feel like he is very through as he sent me for all the blood tests, sent me to have a bone scan and referred me to a dermatologist. Since he told me that I have been going slightly crazy and eating everything that I love that I know will never be the same and have been feeling horrible health wise. I do have a lot of the symptoms, Im just scared there are no answers. My sister doesnt even try to understand and tells me that going gluten free should be easy since she can do it. She went on the south beach diet and thinks that is going gluten free. I am really scared and I know that this is a huge life changing disease. Can anyone offer any advice on how to approach not only the doctors but also my family.

Anything would be greatly appreciated.

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

Celiac.com Sponsor (A8-M):


Jestgar Rising Star
Jestgar
Posted

I'll hold your hand. Take some deep breaths and calm down. Now, repeat after me: I am in control of my health.

Ok, now that you're a little calmer. Crohn's is a real diagnosis. If that's the definitive diagnosis, then you do have it. But you could also have Celiac. You have a sibling with Celiac. This increases your chances of having the disease.

Yes, this is a life-changing disease, but the most amazing part of the change is how well you feel. It's also a diet-changing disease. This is tricky, but like anything, it gets easier with practice.

And this is a disease that YOU have control of. If the doctors give you no answers, you can change your diet yourself and decide if it makes you better.

And finally, you can't change other people. If you find that the gluten free diet makes you feel better you can point this out to other family members, but only they can decide to try it for themselves.

Are you feeling any better?

nothing but nicole Apprentice
nothing but nicole
Posted
  • Author
I'll hold your hand. Take some deep breaths and calm down. Now, repeat after me: I am in control of my health.

Ok, now that you're a little calmer. Crohn's is a real diagnosis. If that's the definitive diagnosis, then you do have it. But you could also have Celiac. You have a sibling with Celiac. This increases your chances of having the disease.

Yes, this is a life-changing disease, but the most amazing part of the change is how well you feel. It's also a diet-changing disease. This is tricky, but like anything, it gets easier with practice.

And this is a disease that YOU have control of. If the doctors give you no answers, you can change your diet yourself and decide if it makes you better.

And finally, you can't change other people. If you find that the gluten free diet makes you feel better you can point this out to other family members, but only they can decide to try it for themselves.

Are you feeling any better?

I know that both diseases are very real and I could possibly be diagnosed with either. I am glad that my doctor is doing the testing that he is to make sure that he doesnt misdiagnose me. I am just to the point where I am so confused. My doctor also sent me to a dietitian and she not only gave me material but also said to me not to start a gluten free diet until I am fully diagnosed. Also on my previous posts I have recieved almost the same response saying that the diet is very taxing and expensive. I really dont know how to go about changing everything. I am the kind of person that in some ways will always need my hand held. I am scared that after the colonoscopy tomorrow I will be no closer to finding answers than I was the day I started having problems. I have been having some issues for a long time but they were always diagnosed as something else. I just think of the things I cant have any more if I am dianosed celiac and I want to cry. I know I need to look at the positive light and think about all the things I love that I can still have but it is really hard to look at things that way. I have been reading some of the posts from other people and am terrified about what I have to face for the rest of my life.

I cant ever remember to ask the doctor the necessary questions when I am in the office and by the time I leave I dont really feel it is worth asking anything because I am just going to play phone tag with his nurse for a couple days. I dont know what to ask the doctor, I wonder if he has any real evidence to base his suspicions on. I know that my symptoms are evidence but why didnt he have the difinitve answer after the last procedure. For me it has really been one doctor after another for my whole life. I am done, I am sick of everytime I go something else is wrong. And I am alone in a city where I have no idea what doctors are truely good and which ones are not.

Im sorry I really shouldnt be freaking out, I feel so lost.

Jestgar Rising Star
Jestgar
Posted

I really will be alright. Feeling bad sucks, and it seems to make everything that much harder. It is overwhelming, but truly, it does get easier. I know that what you want is to just KNOW so you can stop wondering and start doing something, but hang in there for now.

If you are willing to keep eating gluten until the testing is finished then do keep stuffing yourself with anything you want. Just try to change your approach while your eating it. Instead of thinking "this is the last time I'll ever have this" try thinking "how can I make this gluten free?"

Spend some time in the recipe section and you'll find that everyone has the same question - how can I make (or buy) what I want? There is a way.

Take some time now to write down your questions so you're prepared when you go to see the doctor. If you feel that your questions aren't addressed remember that it's his failing, not yours.

You can do this.

PeggyV Apprentice
PeggyV
Posted

Poor thing!

I know it is hard to be going through this alone, but what ever the outcome you will be able to deal with it. Believe in yourself, I am sure there is strenght within you havent tapped.

I have been on a glutten free diet for 4 months. My daughter who is 23 started hers 5 months ago. It really is not as expensive as you would think. It can be a little inconvienent, but with a little organization it isnt bad. It sounds harder then it is.

I make most of my lunches now to take to work. I make larger batches of soup, cassaroles, etc and freeze. If I eat out I eat salad bars for the most part or hamburger patties. It does make you eat healthier, but in the long run that is good. I am sure I appreciate the benefits more at 50 then I would have at 24.....

There are a lot of nice people on this site, with years of experience. They have been very helpful and supportive of my questions and sometimes just when I need to vent my frustration.

Just hang in there, it will get better.

Archived

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

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


  • Member Statistics

    • Total Members
      131,547
    • Most Online (within 30 mins)
      7,748
    gizmo1jazz2
    Newest Member
    gizmo1jazz2
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

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



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Taken Seriously

      By Scott Adams · Posted

      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By Scott Adams · Posted

      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Protein or fat?

      By Scott Adams · Posted

      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.