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

Ack, Feel Like I'm Chasing My Tail

up-late

Recommended Posts

up-late Rookie
up-late
Posted

Well I finally got to the allergy clinic after several doctors refusing to send me and wanting to blame it on anything from depression to irritable bowel to chronic fatigue (I thought they were meant to eliminate all the other potential physical causes first :angry: ) One sent me for bloods some of which came back positive and then told me she didn't know what they meant :blink:

When I got to the clinic the doc there didn't do any allegy testing and put me straight on the elimination diet instead which comes a close second in the running for a perfect hell. Now after about a month of feeling great I'm exhausted and irritable due to the poor nutrition of the diet, the challenge reactions, getting more so and far more sensitive on top of it. I've had a few nasty reactions with the challenges so far (not suprisingly wheat but dairy and amines I've had some reaction to as well) I've still got a stack left to do and the sulfites is a real worry, the last time I had something with 220 in it I was violently ill, they want me to do the tests at home, no way am I going to do that, I don't want to end up in the emergency room again.

Anyhow, I want to go get a complete allergy scratch/bloods and celiac screening. They've already told me I'd have to eat gluten to be tested for celiac (which will last about 3 days before I'm ready to leap off the gap) are there any tests that don't require I eat gluten for any more than a day or two? I get nailed by just a small amount and by day 3 it's about as bad as that part of it gets, I wouldn't risk longer than that, I don't want to get back to the stage where I can't even drink water without being in pain. Will a scratch test be enough? What's the difference between gluten allergy and celiac?

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

Celiac.com Sponsor (A8-M):


dbmamaz Explorer
dbmamaz
Posted

I'm kinda new to all this, but this is my understanding. An allergy is an IgE response, and its usually things like hives, trouble breathing, shock, trips to emergency room. Gluten intolerance is an IgG response, which is a more delayed response usually. Celiac disease is a gluten intolerance which has gone so far as to kill off the hair-like structures inside your gut.

While it is often helpful to have a diagnosis, many on this board dont bother. You can pay cash for testing through various labs - enterolabs (i think thats it) does very accurate testing (i believe of stool). I did a blood test through A.L.C.A.T (if you dont put in the dots, the name gets changed on this website, but you can goodle it without the dots) does a blood test which can test for tons of different foods, additives, etc. I believe the enterolabs tests are the most accurate even if you havent been eating the item, but the AL CA T can also find things you dont eat - for example, my worst reaction was to duck, which i have eating maybe a half dozen times ever, and not in 2 years. However, neither of these tests are accepted by most doctors.

But the real question is - do you really want to feel sick by eating things, just so a doctor can write down on a piece of paper that you have a disease? If they say you dont have celiac but you feel sick when you eat gluten, you arent going to eat more gluten! Doctors really arent very good at much but giving pills. Dont expect a doctor to come figure out what exactly is wrong with you and fix it for you, they just dont do that. THey prescribe pills, thats what they are paid to do, by the pharmaceutical companies.

Sorry you are so sick and hope you find a way out of it

up-late Rookie
up-late
Posted
  • Author

About 18 years ago was when I had the worst of my symptoms (just after I had my eldest son, yes it's been going on this long and a stack of misdiagnosis in the mean time where the treatment made me worse eg: "irritable bowel, eat more high fibre cerials") I don't ever want to get that sick again. I don't know if I posted on it before but I lost 4 stone in 6 weeks and ended up eating high calorie foods just to keep some weight on, I was up the hospital on average twice a week in agony, all the stomach problems described, I couldn't even drink water without my stomach cramping. They took my blood pressure and it was dangerously low, the nurse couldn't find my pulse, guess what happened, the idiot doctor came down and called it anorexia, he then threatened to put me in the psych ward accusing me of starving myself! At another hospital the nurses thought me being glued to the bathroom was funny. You know they didn't even put in a drip to rehydrate me. This went on for 2 years. Meanwhile I got so small I was flat out finding clothes to fit and had to buy stuff from the childrens section. I went home and started making out my will. You know how I finally stopped most of it? I started alternating fasts a few days with eating a few days to give my system a rest, started a food diary cutting out anything I reacted to and just about bought out the local chemists supply of imodium. I have no idea just how much damage all this has done to my body. So am I going to eat gluten for 3 months to satisfy a bunch of medicos who can't get anything right? are they going to treat me if I get that sick again? I don't think so.

Anyway no doubt this has done some damage, so what damage is it likely to have done? Is there a pattern of related problems that can be tested that are unique to celiac? (eg bone density, anemia, bowel, brain etc) If they can't test for celiac directly can they test for its long to medium term effects? After all this I really should be getting tested for that stuff anyway.

Archived

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

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


  • Member Statistics

    • Total Members
      131,554
    • Most Online (within 30 mins)
      7,748
    Becky 0163
    Newest Member
    Becky 0163
    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.