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

I'm Not Celiac...

khyricat

Recommended Posts

khyricat Rookie
khyricat
Posted

The blood tests came back "negative" now she said soemthing about less then 20 which meant negative is this true? I need to look up the testing results others posted. I was actually hoping it was this, because otherwise I am still undiagnosed. I know my bumps and stuff aren't as bad as the pics I've seen of DH- they are just itchy bumps and only get red when scratched too long... and I try hard not to scratch, but they are spreading and my tummy problems are gettign worse and they still kee telling me its just IBS. the drugs don't worka dn they have reversed the original diagnosis of Crohns because they say the test was read wrong and I didn't hae any scarring or ulcerations when they looked back at it... any suggestions would be welcome at this point.

I am pretty sure its food based, but I can't figure out WHAT FOOD! I have another appt on the 5th of August (she finally called me back with test results for the celiac test almost a month later, but won't move the other appt up) and I am going to ak her about sending me for an enterolab screening and getting insurance to cover it... because I can't help but wonder if it will make a BIG difference if we do it!

Does anyone else know fo ailments that do similar things- lassitude, diahrea and constipation both, fatty stools, basically I found like 40 yesses on the list of symptoms for celiacs.. that helped me hope it was that!

would going on a gluten free diet anyway maybe help if the celiac blood panel was negative?

Amie in MI

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

Celiac.com Sponsor (A8-M):


taneil Apprentice
taneil
Posted

The blood tests could be negative and you still have celiac disease and/or DH. Go with Entrolab, because there results are more sensative than blood tests.

Guest jhmom
Guest jhmom
Posted

Hi Amie:

I am sorry you are having such problems getting a diagnosis. There are many of us here that know exactly what you are going through. I went through so many procedures (colonoscopy,etc) only to be told I had a severe case of IBS, well I knew better and I would not accept it! I also leanred that doctors are not very educated on this disease and only see things in black in white, they want to see positive results, they want to see someone skinny, they want to see damamged villi etc...and if they don't they thinks its IBS. Of course in their defense it does take time for a disease to show up in the blood, but time was something I didn't have, I had already suffered for over a year. I took the enterolab route (along with my 8 yr old daughter) and our results were positive, we began the gluten-free diet and could tell a difference within a couple of days.

I think if your blood test come back negative that you should either be tested through Open Original Shared Link or try the gluten-free diet for a couple of months.

Good luck to you, I hope you get some answers soon! :D

khyricat Rookie
khyricat
Posted
  • Author

Thanks- mom says she thinks the doc is laughable because they are ruling things out without proper testing in her mind- she has crohns and I didn't have any new physical tests- just bloodwork, but they are saying because I didn't have physical signs of crohns 3 years ago I don't have it now... even though my SED levels are high, AND she says I sound like her friend michelle who has celiacs and went misdiagnosed for 10 years.

I think once I am back on 2 feet after Fri's wisdom teeth removal (no time to shop for things between now and then) I am going to go gluten free... I may be in the interim, I think most of the stuff I have to eat is safe, but I didn't doublecheck the spices I used in the low tomato mild chili I made myself after overcooking beans and some other things like that....

I am goign to call the doc this afternoon- she only mentioned 2 things being normal in my celiac panel but I thought they had 4, so I'm going to have a serious talk with her and ask to see the actual results- fax or email, since I don't want to wait until the appt on 8/5...

And I am going to seriously research other docs.. but I hate the idea of traveling out of the COUNTY to see one- this practice is the only one in the county, although tehre are multiple docs there, maybe I'll switch but she's the second one I've seen in the office.

Amie

GEF Explorer
GEF
Posted

Wow, Aug is a long time to wait for an appointment. You know your body best sometimes and when it's telling you that something is wrong, something is probably wrong. I hope you feel better soon and that you get your answers.

Gretchen

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. FannyRD
      - FannyRD replied to FannyRD's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Gluten free phosphate binders for dialysis patients

      Thanks for the resource! I will check it out!
    2. Scott Adams
      - Scott Adams replied to FannyRD's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Gluten free phosphate binders for dialysis patients

      You can search this site for 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"...
    3. Scott Adams
      - Scott Adams replied to Cecile's topic in Related Issues & Disorders
      2

      Symptoms

      Living with celiac disease can be especially hard when you’re in a smaller town and don’t have many people around who truly understand it, so you’re definitely not alone in feeling this way. Ongoing fatigue, joint pain, and headaches are unfortunately common in people with celiac disease, even years after diagnosis, and they aren’t always caused by gluten ...
    4. trents
      - trents replied to Cecile's topic in Related Issues & Disorders
      2

      Symptoms

      Welcome to the celiac.com community, @Cecile! It is common for those with celiac disease to develop sensitivity/intolerance to non-gluten containing foods. There is a high incidence of this with particularly with regard to dairy products and oats but soy, eggs and corn are also fairy common offenders. Like you eggs give me problems depending on...
    5. FannyRD
      - FannyRD posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Gluten free phosphate binders for dialysis patients

      I work as a renal RD and have a Celiac pt which has been rare for me (I might have had 3-4 Celiac pts in 15 years). I wondered if anyone can confirm that these medications are gluten free and safe for Celiac. Ferric citrate (Auryxia) Sucroferric oxyhydroxide (Velphoro) lanthanum carbonate (Fosrenol) sevelamer carbonate (Renvela) ...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,180
    • Most Online (within 30 mins)
      7,748
    Eldret419
    Newest Member
    Eldret419
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • FannyRD
      Gluten free phosphate binders for dialysis patients

      By FannyRD · Posted

      Thanks for the resource! I will check it out!
    • Scott Adams
      Gluten free phosphate binders for dialysis patients

      By Scott Adams · Posted

      You can search this site for 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
      Symptoms

      By Scott Adams · Posted

      Living with celiac disease can be especially hard when you’re in a smaller town and don’t have many people around who truly understand it, so you’re definitely not alone in feeling this way. Ongoing fatigue, joint pain, and headaches are unfortunately common in people with celiac disease, even years after diagnosis, and they aren’t always caused by gluten exposure alone. Many people find that issues like low iron, low vitamin D, thyroid problems, other autoimmune conditions, or lingering inflammation can contribute to that deep exhaustion, so it’s reasonable to push your doctor for more thorough blood work beyond just vitamin B. As for eggs, it’s also not unusual for people with celiac disease to develop additional food intolerances over time; tolerating eggs as an ingredient but not on their own can point to sensitivity to the proteins when they’re concentrated. Some people do better avoiding eggs for a while, then carefully testing them again later. Most importantly, trust your body—if something consistently makes you feel awful, it’s okay to avoid it even if it’s technically “allowed.” Many of us have had to advocate hard for ourselves medically, and connecting with other people with celiac disease, even online, can make a huge difference in feeling supported and less isolated.
    • trents
      Symptoms

      By trents · Posted

      Welcome to the celiac.com community, @Cecile! It is common for those with celiac disease to develop sensitivity/intolerance to non-gluten containing foods. There is a high incidence of this with particularly with regard to dairy products and oats but soy, eggs and corn are also fairy common offenders. Like you eggs give me problems depending on how they are cooked. I don't do well with them when fried or scrambled but they don't give me an issue when included in baked and cooked food dishes or when poached. I have done some research on this strange phenomenon and it seems that when eggs are cooked with water, there is a hydrolysis process that occurs which alters the egg protein such that it does not trigger the sensitivity/intolerance reaction. Same thing happens when eggs are included in baked goods or other cooked dishes since those recipes provide moisture.  So, let me encourage you to try poaching your eggs when you have them for breakfast. You can buy inexpensive egg poacher devices that make this easy in the microwave. For instance:  https://www.amazon.com/Poacher-Microwave-Nonstick-Specialty-Cookware/dp/B0D72VLFJR/ Crack the eggs into the cups of the poacher and then "spritz" some water on top of them after getting your fingers wet under the faucet. About 1/4 teaspoon on each side seems to work. Sprinkle some salt and pepper on top and then snap the poacher shut. I find that with a 1000 watt microwave, cooking for about 2 minutes or slightly more is about right. I give them about 130 seconds. Fatigue and joint pain are well-established health problems related to celiac disease.  Are you diligent to eat gluten-free? Have you been checked recently for vitamin and mineral deficiencies? Especially iron stores, B12 and D3. Have you had your thyroid enzyme levels checked? Are you taking any vitamin and mineral supplements? If not, you probably should be. Celiac disease is also a nutrient deficiency disease because it reduces the efficiency of nutrient absorption by the small bowel. We routinely recommend celiacs to supplement with a high potency B-complex vitamin, D3, Magnesium glycinate (the "glycinate" is important) and Zinc. Make sure all supplements are gluten-free. Finally, don't rule out other medical problems that may or may be associated with your celiac disease. We celiacs often focus on our celaic disease and assume it is the reason for all other ailments and it may not be. What about chronic fatigue syndrome for instance?
    • FannyRD
      Gluten free phosphate binders for dialysis patients

      By FannyRD · Posted

      I work as a renal RD and have a Celiac pt which has been rare for me (I might have had 3-4 Celiac pts in 15 years). I wondered if anyone can confirm that these medications are gluten free and safe for Celiac.  Ferric citrate (Auryxia)  Sucroferric oxyhydroxide (Velphoro)  lanthanum carbonate (Fosrenol) sevelamer carbonate (Renvela)   Thank you!
×
×
  • 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.