Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Gone Gluten Free But Need Diagnosis?

Jackyhy

Recommended Posts

Jackyhy Newbie
Jackyhy
Posted

Hi all, just had a question and I'm not sure if my doc will know the answer. I have been feeling terrible for the past 2 years. Every since I got pregnant, I had 9 months of feeling like I had cancer and was going to die. Everyone kept saying it was just the pregnancy. My baby is now 15 months old and I am at my wits end. I have been to the doctor more this year than ever before. I feel horrible all the time. Migraines no energy, nausea, sick all the time. It can really beat a person down. After being sick on Christmas I had had enough. I know people that have been diagnosed with celiac disease after just generally feeling bad for a long time. I have not ever thought it might be celiac disease but my husband reminded me again what my diet has been like since having the baby. Cereal and bagels etc(nothing but gluten)anyway. I went gluten free three days ago and I feel great(I know that seems crazy and way too quick of a turn around but I feel human again). Everything tells you not to go gluten-free untill you see your Dr and get a diagnosis because after you go gluten-free it will be negative. I have a doctor that is pretty open to anything so I know he will order the lab for me but my real question is will the lab be negative even though I will have only been gluten-free for a few days to a week? Any input would be greatly appreciated!

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

Celiac.com Sponsor (A8-M):


confusedks Enthusiast
confusedks
Posted

A lot of people on this board think that your positive results would be enough to stay off of gluten. Ultimately you have to decide how important a diagnosis is. The one thing I really regret is not waiting to go gluten free, but I had other pressing health problems that forced me to do it, so... OH WELL!

If you want a better chance of getting positive lab work, you will need to stay on gluten. Keep in mind, if you have negative blood work, that doesn't mean you don't have Celiac.

You could also look into Enterolab because they do stool testing and you don't have to be actively eating gluten for results. The only issue there is if you want a "Celiac" diagnosis, they cannot do that! The can tell you if you are reacting to gluten though.

pixiegirl Enthusiast
pixiegirl
Posted

For what its worth I didn't have any symptoms of Celiac until I was pregnant, that was my trigger I guess. It took me 11 years to figure out what was wrong with me. I went gluten-free on my own too and felt far better (not 100% but 80% better maybe) after just a few days. I ended up doing an entrolab test and found out I have both of the main celiac genes. But honestly I didn't need that to go gluten-free I was feeling so much better.

But I know I have it I don't need a biopsy (I did have one for another reason but by that time I had been gluten-free for 2 years) because every single time I've goofed with gluten I get soooo sick. Unlike some people here that say they miss gluten items (bread, pizza) I don't... they make me so ill that there is no joy associated with them for me.

I do eat gluten-free pizza (Chebe) and make my own bread but very rarely I've pretty much lost a lot of desire for simple carbs. I still like rice and potatoes and I eat rice pasta from time to time but I don't crave carbs any more.

Good luck!

Susan

Jackyhy Newbie
Jackyhy
Posted
  • Author

I absolutely feel the same way. (I know its only been a few days) Someone brought a huge plate of cookies to work and I never gave it a second glance. I am an ablolute sweets addict but I feel so great, I could care less about what I am giving up. It's totally worth it to feel human again. I guess my biggest question was whether I would still test positive after a week of being gluten free or if that was enough to make it negative.((If I truly am celiac) sounds like you got a diagnosis after being gluten free for a while so I'll probably go ahead and try. I do really want to know for my son who does seem to have some intolerances,had a milk protein allergy from birth, bloody stools and all, and he still seems fairly lactose intolerant. For me it doesnt really matter because I feel so much better I will stay gluten free no matter what the results. My husband is already a huge fan of me on this diet, I havent complained about how bad I feel for a full four days( a record) Thanks so much for all your help! I almost forgot, can anyone tell me the exact labs to have drawn? I work at a hospital so I will just tell my doctor what to order and have it drawn at work! Thanks again!!!

Jackie

Archived

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

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


  • Member Statistics

    • Total Members
      127,860
    • Most Online (within 30 mins)
      7,748
    PCM
    Newest Member
    PCM
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.5k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Opinions on my test results/symptoms

      By Scott Adams · Posted

      Villi damage is caused by celiac disease, which does not happen in NCGS, although some people with NCGS do have elevated antibody levels. Some people with NCGS who have the genes for celiac disease may end up developing celiac disease, so in some people NCGS may be a precursor to celiac disease, but more research needs to be done on NCGS. Both low iron and vitamin D are common symptoms of celiac disease. Also, regarding beer:  
    • Scott Adams
      Vaccines

      By Scott Adams · Posted

      It’s true that some vaccines contain small amounts of preservatives, stabilizers, or adjuvants to ensure their safety and effectiveness. For example: Thimerosal: A preservative that contains ethylmercury (not to be confused with methylmercury, which is toxic). Most routine vaccines no longer contain thimerosal, except for some flu vaccines in multi-dose vials. Aluminum: Used in very small amounts as an adjuvant to boost the immune response. The amount is far below levels considered harmful, but if you suspect an aluminum allergy, it’s worth discussing with your doctor. Sugar alcohols: These are sometimes used as stabilizers, but they are generally well-tolerated. If you have a known intolerance, you can ask about specific ingredients in each vaccine. Since you mentioned an intolerance to metals and jewelry, it’s a good idea to follow up with allergy testing, as you planned. This can help identify specific metals (e.g., nickel, aluminum) to avoid. Your doctor can then guide you on whether any vaccine ingredients might be a concern. Since the Mayo Clinic has already identified potential allergies, it might be helpful to consult an allergist or immunologist. They can review your medical history, perform tests, and provide personalized advice on vaccines and their ingredients. While it’s important to address your intolerances, it’s also worth considering the risks of not being vaccinated. Many vaccine-preventable diseases can have serious consequences, especially for those with underlying health conditions. 
    • knitty kitty
      Hidden Gluten in distilled vinegar

      By knitty kitty · Posted

      @Manaan2, I was on Miralax for several months after I crushed three vertebrae and fractured my hip.  The compression fractures of my vertebrae affected the Vagus nerve that stimulates digestion and intestinal movement, peristalsis. Miralax just didn't relieve the constipation I was experiencing at all.  Nothing budged.  I tried Milk of Magnesia (magnesium oxide) which pulls water into the digestive tract, and found that rather harsh and dehydrating.   Bad idea. I was already taking thiamine in various forms, Benfotiamine, TTFD (tetrahydrofurfuryl  disulfude), Lipothiamine and Allithiamine.  Click on my name, then Activities in the pull down menu to get to my blog to learn more about my journey with thiamine.   Since we need more thiamine when we are physically ill and emotionally stressed, I decided to focus on TTFD,  Benfotiamine, and magnesium l-threonate.  Within a week of increasing my doses a bit, my constipation was gone.  It took several more months to heal the compressed nerve damage.  For pain, I take a combination of TTFD, Pyridoxine B 6, and  Cobalamine B12 which together have an analgesic effect.  I can't function with pharmaceutical pain killers, besides they cause constipation.   Mechanisms of action of vitamin B1 (thiamine), B6 (pyridoxine), and B12 (cobalamin) in pain: a narrative review https://pubmed.ncbi.nlm.nih.gov/35156556/ Yes, I did just stop the Miralax, but I wasn't on it as long as your daughter.  Yes, there's a difference between adults and children.  Yes, my circumstances were different than your daughter's, but thiamine deficiency does affect the nerves and the brain.  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function (which activates the Vagus nerve and controls digestion).   I recommend you visit Dr. Chandler Marrs' website, hormonesmatter.com.  Dr. Marrs worked with Dr. Derrick Longsdale, a pioneer in thiamine research, specifically with children and autism spectrum disorders.  She has been very helpful to me when I reached out to her.  She would be better able to guide you about your daughter's care. https://hormonesmatter.com/sibo-ibs-constipation-thiamine-deficiency/#google_vignette Do stay in touch, please.  You can start another thread or personal message me any time.  My heart goes out to you, your husband, and especially your daughter.   Namaste
    • Manaan2
      Hidden Gluten in distilled vinegar

      By Manaan2 · Posted

      @knitty kitty  The information you've provided is invaluable!  I have a lot more homework to do before we make the official switch but you have significantly increased my hope that we can get her off Miralax (she started at 3 years old and is almost 8!).  This weekend my husband and I plan to solidify all the details for a start point, then adjust as we go along.  I realize that everyone's body is different, then there's also the fact that she's a child but just out of curiosity if you don't mind sharing and if you'd rather not, no problem at all-how long did you take Miralax before switching and when you switched, did you just completely stop the Miralax or was there a period where you did Miralax and the supplements?  I plan to research that piece this weekend but just curious what you did.  
    • BIg Nodge
      Opinions on my test results/symptoms

      By BIg Nodge · Posted

      Scott, thanks so much for the thoughtful replies. My doctor did actually just re-order thyroid labs to see what is going on with my TPOs. I agree that will be interesting information.  I think I know the answer to this, but as far as the biopsy . . .. that would be quite conclusive as far as celiac goes, but a negative result would not rule out NCGS, correct? Does NCGS also cause damage to the lower intestine/leaky gut?  I appreciate the thought that I should be open-minded to other causes. I did not have dysautonomia on my radar, so I will look into that. From a quick scan at the potential symptoms it seems like almost anyone could convince themselves they have it, very broad! I can see why that is a tricky one to diagnose. I did also show low vitamin D, I'm in New England so that is somewhat common. I have a memory of low iron on some lab result as well but I can't find it, so I'll look into that. My cholesterol is high too, so working on that.  While the initial adjustment was tough, I have actually adapted fairly well to going gluten-free at home. The tough part for me is I love eating out and traveling, so that has been a challenge. I suppose if the answer ends up being NCGS then I could maintain a mostly gluten-free diet but also experiment with the occasional splurges. Snowboarding just doesn't feel right without a beer in the lodge . . ... cider is just not the same!  Thanks again.  
×
×
  • Create New...