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

Symptoms And Should I Be Tested?

BeckyMR

Recommended Posts

BeckyMR Newbie
BeckyMR
Posted

I am new to this forum and wanted to share a little bit about me and get some advice from those who have gone before :)

This is my symptom history...

-severe constipation all my life (think worst case scenario)...I NEVER struggle with diarrhea

-psoriasis appeared on my knees and elbows about 15 years ago (knee has never gone away)

-after birth of my 2nd child... chronic upper back pain started (between shoulder blades) and has continued off and on for 9 years; have been treated by chiropractor;

-always struggled with not having stamina despite exercising and eating healthy; I always am the first to need to rest

-Always known to many as "FORGETFUL" and have struggled with brain fog for the last 5 years

-4 years ago I started having sinus stuffiness on my right side. The ENT did a cat scan and said it was all normal and that maybe it was due to a deviated septum.

-I started having this anal pain which is like a charlie horse in my anus. It is EXTREMELY painful and lasts for 30 min or so. My mom also has this. I know it has something to do with what I eat and am curious if anyone else has experienced this???

-20 months ago I had a complete reconstruction done on my left foot to correct a congenital defect. They did 3 bone grafts and one did not heal. The doctor was baffled and said there was a 5% risk category for this to happen and I didn't fit any of the risk factors: age (I was almost 35 at the time), diabetic, and a smoker (I am neither of the last two).

-1 year ago my OB-GYN diagnosed me with PCOS (Poly Cystic Ovarian Syndrome)

-8 months ago we adopted 2 older children to add to our 3 bio children and life has been a little more stressful!

-3 months ago I had another surgery to correct the bone graft that didn't take from the first surgery

-after the surgery I suffered from EXTREME diarrhea from a bug I picked up in the hospital

-since the surgery my digestion has gotten much worse. My stomach gurgles after I eat and I have extreme gas.

-I did a saliva test to test my hormones and cortisol levels. My hormones are off and while cortisol is normal, the test summary says that they are being taxed and I am headed to adrenal fatigue if I don't change some things. I also got my thyroid tested and am waiting for the results to come back (maybe today)

For the last 3 years we have eaten a limited amount of gluten. My daughter is ADHD and we were able to pull her off of medicine after we took gluten out of her diet. I had never been totally gluten free until a couple of weeks ago when I decided to try and see if it helped me. A friend of mine who is a registered dietician and nutritionist told me not to get tested so I wouldn't have it on my medical record for future insurance purposes.

My questions:

1. The more I read the more I think that I may be a celiac and not just "gluten intolerant" and would like to be able to affirmatively tell that to people since I will have to do so the rest of my life. Has anyone had trouble getting health insurance if they had to switch or had a higher premium for life insurance?

2. Since I have been gluten free for the last 3 weeks (with one or two mistakes), do I have to go back to eating gluten for a month to have the test done accurately?

3. The first week I eliminated gluten I felt great and saw my swollen belly begin to shrink and look normal. Last Friday I reacted to something, could be dairy which I know I am sensitive to, but have had trouble getting over it and seem to be reacting to everything...soy, beans, minimal dairy (which used to not bother me) this week. What are your experiences with other sensitivities and what do I need to eat to heal?

4. Does this sound like celiac or could it be a dairy allergy or intolerance?

Thank you for your input! I go back and forth on thinking it may be celiac or it may just be an allergy to dairy or something else. I just want to hear from others who have walked this road and can share their experiences with me.

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

My questions:

1. The more I read the more I think that I may be a celiac and not just "gluten intolerant" and would like to be able to affirmatively tell that to people since I will have to do so the rest of my life. Has anyone had trouble getting health insurance if they had to switch or had a higher premium for life insurance?

Yes some folks have had trouble with insurance once celiac is diagnosed as it would then be a preexisting condition.

2. Since I have been gluten free for the last 3 weeks (with one or two mistakes), do I have to go back to eating gluten for a month to have the test done accurately?

Since you have been gluten light for quite a while and gluten free for 3 weeks 3 months back on gluten would be the best thing to do. Even then you could have a false negative.

3. The first week I eliminated gluten I felt great and saw my swollen belly begin to shrink and look normal. Last Friday I reacted to something, could be dairy which I know I am sensitive to, but have had trouble getting over it and seem to be reacting to everything...soy, beans, minimal dairy (which used to not bother me) this week. What are your experiences with other sensitivities and what do I need to eat to heal?

The easiest and IMHO best way to heal the fastest is to go with whole naturally gluten free food.

4. Does this sound like celiac or could it be a dairy allergy or intolerance?

Yes IMHO it does sound like celiac or gluten intolerance. It isn't unusual for us to need to avoid other foods at least until we have healed. Some of those we may be able to add back in after we have healed.

Thank you for your input! I go back and forth on thinking it may be celiac or it may just be an allergy to dairy or something else. I just want to hear from others who have walked this road and can share their experiences with me.

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.