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

Sometimes I Really Hate Doctors

Becksabec82

By Becksabec82
in Coping with Celiac Disease

Recommended Posts

Becksabec82 Newbie
Becksabec82
Posted

I was diagnosed with a gluten-intolerance several years ago. The tests were inconclusive, but my doctor was pretty darn sure of it. I had previously been diagnosed with IBS-D, and I responded to a gluten-free diet so he kind of just went with it.

After I had my son last year, my doctor had said some people can tolerate gluten after pregnancy, so he said I could slowly add a little in and see how I dealt with. I was able to successfully move to a non-gluten free diet.

Well....

A couple months later, I started getting sick a lot and I'm to the point where I get infections every 3-4 weeks (mostly upper respiratory stuff), my anemia has returned, IBS-D has come back as has my rosacea (both were in remission for several years). I've also developed a problem with joint pain, headaches, fatigue. My doctor had said that it was tonsilitis, and so I had a tonsilectomy three months ago. I'm still sick every month, and I have chronic throat pain. I've been on painkillers for probably about 6 months. And I just feel so warn down.

Might be time to revisit the gluten-free diet.

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

Celiac.com Sponsor (A8-M):


shadowicewolf Proficient
shadowicewolf
Posted

better idea, get tested officially again. You have a child now, Celiac is genetic. Then try the diet again.

GottaSki Mentor
GottaSki
Posted

Welcome!

I agree with getting tested again full celiac panel plus nutrient testing - then regardless of what the blood says - remove ALL gluten (unless you think you may have an endoscopy to confirm diagnosis).

The return of your symptoms plus a few more sounds very much like the progressively worsening symptoms of Celiac Disease and will likely continue to get worse.

Let us know if you have more questions :)

As Shadow said - a diagnosis may become very important to your child/other future children.

Mri3 Newbie
Mri3
Posted

I was diagnosed with a gluten-intolerance several years ago. The tests were inconclusive, but my doctor was pretty darn sure of it. I had previously been diagnosed with IBS-D, and I responded to a gluten-free diet so he kind of just went with it.

After I had my son last year, my doctor had said some people can tolerate gluten after pregnancy, so he said I could slowly add a little in and see how I dealt with. I was able to successfully move to a non-gluten free diet.

Well....

A couple months later, I started getting sick a lot and I'm to the point where I get infections every 3-4 weeks (mostly upper respiratory stuff), my anemia has returned, IBS-D has come back as has my rosacea (both were in remission for several years). I've also developed a problem with joint pain, headaches, fatigue. My doctor had said that it was tonsilitis, and so I had a tonsilectomy three months ago. I'm still sick every month, and I have chronic throat pain. I've been on painkillers for probably about 6 months. And I just feel so warn down.

Might be time to revisit the gluten-free diet.

Really seems like you're reacting to gluten; especially since you indicate you were doing so well when you initially removed it. I agree with you that you should probably return to gluten free.

Often times with autoimmune, medical community seems to be at the mercy of how the disease presents itself. As a medical professional myself, I'm not disparaging the profession at all. It just simply seems that every person's symptoms vary greatly, so it's difficult to coral autoimmune into a defined "box". Coupled with hormonal fluctuations (ie- having a baby) - autoimmune can be volatile.

Personally, I spent years +++++ trying to figure out what was "wrong" with me. Took my own research & elimination diet. Identified gluten as a trigger but mostly wheat allergy. I am much more reactive to wheat (especially gmo wheat) than anything else; (ie - sinus migraine, congestion, headaches, skin lesions, inflammation, bloating - you name it:) ALL gone when I don't eat wheat/gluten. Removing wheat also helped my thyroid medicine be better absorbed & used by the body. No doctor (or even a few nutritionists) ever suggested a gluten free diet for thyroid. I pursued it myself after all my "researching" :)

On a side note, my Dad has an intestinal issue that was mostly asymptomatic for 60 + years; a few years ago had to have piece of intestine removed when it was found to be lesioned & destroyed. Doctors were shocked. Doctors place him in the "crohn's" category - though he's still asymptomatic but must be on meds/steroids etc. to keep intestine from inflammation and multiple lesions. He responds to gluten/wheat free but has a hard time maintaining it:) Additionally, my sister, was just diagnosed with Behcet's disease (doctor says it's like a "sister" disease to crohn's) - she had a baby ten months ago & the symptoms started after giving birth (those hormones!). Her lesions were oral, facial & swollen tongue. She is following wheat free/gluten free now and has been successful in no further outbreaks. She is too young for constant steroids and no meds are compatible really with childbearing so she is going the diet route (doctor thinks best route given her age, symptoms & my success with it). So the genetic component is important for you to note (obviously we both inherited genes from my Dad & the allergy/intolerance manifested differently in all three of us, but is definitely wheat related).

Not all issues are diagnosable by specific tests; it is important to note your responses to foods and know yourself. If you are able to follow the gluten free and feel "better", you should give it a try again. Best of luck to 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
      131,553
    • Most Online (within 30 mins)
      7,748
    Jennifer CCC
    Newest Member
    Jennifer CCC
    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.