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

New, With Many Questions....

HeatherR

Recommended Posts

HeatherR Newbie
HeatherR
Posted

Hello all,

This is my first post, but I've been reading through your posts. I don't even know where to start. My son has the celiac gene and has been BACK ON wheat for the last month or so to have his biopsy. He is 12.

We've been dealing with this problem since he was five and the doctors would just give him a laxative and tell him he needs to try harder to go. Yep, why didn't we think of that? Anyway, he's been off wheat and dairy for 2 1/2 years now, and is sure enjoying himself ( As long as he takes his laxative twice a day!)

Okay, after we found out that my son had the gene, and my husband (who is allergic to wheat) does not have the marker, I had to be tested. I'm still waiting for the results.

But I had bought a book on celiac earlier so that my son and I could go over the things he could and could not have when he's reading labels. I decided to read the entire book since my son has the gene, and I wanted to know everything about it. I was floored!!!

I have been ill since my youngest son was born! And I was absolutely shocked at some of the symptoms that come from celiac. I have been on disability for 6 years diagnosed with ms. I have a new neurologist, and he says I don't have ms, but I have something.

My symptoms are so many, and on and off, but the absolute worst one is fatigue. I sleep all night long, and will be so tired when I get up that I will sleep for another four hours or so, almost daily.

I have balance issues, dizziness, vertigo, shooting pains, nerve pain, swelling of my hands, feet, ankles, and calves, numbness, tingling, brain fog, problems using the right words, cognitive problems, memory loss, joint pain. There's more, but I can't think of it right now.

My question is, has anyone else had these symptoms and have it be celiac?

I know this is long, but I appreciate all who take the time to read it.

HeatherR

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

Celiac.com Sponsor (A8-M):


CarlaB Enthusiast
CarlaB
Posted

It could be. Have you been eating gluten-free? If not, are you planning on being tested?

You have pretty serious symptoms that may or may not be celiac. I think it would be good to be tested so you know for sure if you're not already gluten-free. Those symptoms can be celiac, in answer to your question, but they can be other things as well.

When I was eating gluten, I had many digestive symptoms, weight loss, dizziness, fatigue, brain fog, joint pain, bruising, etc.

I have fatigue really badly, too. It's gotten so much better since I've read Tired of Being Tired by Jesse Lynn Hanley, MD and implemented her ideas. I think you'd get a lot out of the book whether gluten is your problem or not.

Keep us posted, feel free to ask questions, and welcome!!

HeatherR Newbie
HeatherR
Posted
  • Author

Thanks for the input. I am still eating gluten at the moment in case I need to be tested. I have gained almost 60 pounds :( due to new meds for pain and such, and feeling increasingly desperate.

As soon as I get the test results back, I'm going on low carb again. I feel much better and maybe I can get some of this weight off, or at least stabilize.

I am really curious to see the results.

HeatherR

CarlaB Enthusiast
CarlaB
Posted
Thanks for the input. I am still eating gluten at the moment in case I need to be tested. I have gained almost 60 pounds :( due to new meds for pain and such, and feeling increasingly desperate.

As soon as I get the test results back, I'm going on low carb again. I feel much better and maybe I can get some of this weight off, or at least stabilize.

I am really curious to see the results.

HeatherR

If you felt better low carb, you very well could have a gluten problem. Keep us posted and feel free to ask more questions.

mouse Enthusiast
mouse
Posted

If you had the test done, please keep in mind that you can have a false negative, but not a false positive. Some doctors do not totally accept the blood test, even if it is positive and insist you have the biopsy done. But, that is sometimes iffy. They have to take 8 to 10 from the right areas to get a Celiac diagnosis. And there are some doctors who accept the diet as definately gluten intolerant. Also keep in mind that if it is Celiac or gluten intolerant, they both require a totally gluten free lifestyle. It is really not that hard to go totally gluten free. I don't know if your son was gluten free, all the way or not, for that 2 1/2 years. Did they tell you how long he has to be on gluten before the tests. It is recommended 3 to 6 months ingesting gluten equivelant of 3 slices of bread a day.

And to answer yout first post. Yes, I had many of those symptoms, before I really went downhill for many months before my diagnosis. The problem is I was diagnosed to late and I now have other problems which come from the late dignosis. My daughter was 40 when I was told I had Celiac. Your son is 12. You need to investigate all avenues to better health, including Celiac. If your Neuro dr. says you do not have MS. Ask him to test for any Neuro problems that could arise from being an undiagnosed Celaic. That way you will keep connected to him. It is important with your problems that you have a Neuro that you like and trust.

Good Luck.

marciab Enthusiast
marciab
Posted

"My symptoms are so many, and on and off, but the absolute worst one is fatigue. I sleep all night long, and will be so tired when I get up that I will sleep for another four hours or so, almost daily.

I have balance issues, dizziness, vertigo, shooting pains, nerve pain, swelling of my hands, feet, ankles, and calves, numbness, tingling, brain fog, problems using the right words, cognitive problems, memory loss, joint pain. There's more, but I can't think of it right now.

My question is, has anyone else had these symptoms and have it be celiac?"

Welcome to the board :)

I had all of your symptoms except the swelling. But, I also had mobility problems and used a motorized cart to go grocery shopping. And visual disturbances especially when walking. And ADHD. And a mystery rash that sounds just like DH. And allergies. :P

I was diagnosed with CFIDS/FM and put on total disability back in 1992. But all this started in 1990 after catching the "flu" that never went away.

Just in the last 6 weeks, most of my symptoms have subsided. One year after going on the gluten free diet. I also eliminated soy, dairy, corn and eggs due to digestive problems.

I can walk normally now. :D:D I love saying that. :D

I don't have an official celiac diagnosis, but my GP decided I was gluten intolerant because immediately after getting the gluten out of my diet I was no longer hyper. Next time I see her I will ask her about this.

So, I believe I am a celiac ... A lot of people consider a positive reaction to the diet a firm diagnosis of celiac.

I am still dealing with some fatigue, but I am having too much fun to rest. B) And I am peri menapausal and deep into hot flash territory. Whew !!!

I hope you find the answers you are looking for. This a wonderful board with a lot of great people. :)

Marcia

tiffjake Enthusiast
tiffjake
Posted

Welcome Heather!

I had many "weird" symptoms because of celiac disease. I second CarlaB. If you want to get blood work done (the celiac blood panel, tTg, IgA, IgG, Esa, i think there is one more...) then you will want to be EATING gluten until you have that done.

But your symptoms sound like they COULD be celiac disease. You could have something else going on that is agrivated by celiac disease. Do go by the gene test alone, because something like 1% do not have the gene....

But welcome, and I hope you find your answer and are feeling much better soon!

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

Celiac.com Sponsor (A8-M):


HeatherR Newbie
HeatherR
Posted
  • Author

Thanks guys. I have been eating gluten, always.

Is there a different test than the one I did? It just said celiac profile.

I guess I'll find out soon enough. I really want to get started just to get some of this weight off.

I'm having surgery soon, and I'd like to have a little headstart, ya know?

HeatherR

Archived

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

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


  • Member Statistics

    • Total Members
      127,833
    • Most Online (within 30 mins)
      7,748
    Lucy20
    Newest Member
    Lucy20
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.4k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Manaan2
      Hidden Gluten in distilled vinegar

      By Manaan2 · Posted

      @knitty kitty I can't thank you enough!  My husband and I already started looking into those supplements.  We definitely plan to give it a try.  We've been against the Miralax since it was originally advised by PCP, but because of the level of pain she experienced on a daily basis, we decided to try it.  We've made many attempts to gradually decrease but due to her pain and related symptoms, we've kept her on it while trying all sorts of other dietary adjustments pre and post diagnosis specific to food; so far none of those efforts have made a significant difference.  I will definitely share how she's doing along the way!
    • BIg Nodge
      Opinions on my test results/symptoms

      By BIg Nodge · Posted

      Hi, I have recently embarked on the gluten-free journey. I have what to me seems like a somewhat confusing set of test results and symptoms. I have been impressed by the accumulated knowledge and thoughtfulness as I browse this forum, so I figured I'd make a post to see if anyone can offer any insight. I know there are many posts like this from new users, so I have tried to do my baseline research first and not ask super obvious questions.  I'm 43, overall very healthy. No history of gluten sensitivity or really any of the classic GI symptoms. About three years ago I started to experience intermittent bouts of fatigue, chills/cold intolerance, and shortness of breath/air hunger (sometimes feels like a hollowness in my chest, hard to describe). The symptoms over time have become fairly significant, though not debilitating, I am able to exercise regularly and am fairly physically active, continue to perform well at work. But for example I have gone from someone who consistently ran hot, was always cranking the a/c, to someone who wears a down vest inside at work in winter and get chills if the a/c even blows on me in summer. I get tired and lose energy even when getting decent amounts of sleep, and have to have my wife take over on long drives that I could previously handle with no problems. More generally when I am experiencing these symptoms they seem to crowd out space in my mind for focusing on my family, my hobbies/activities etc, I sort of withdraw into myself.   I happened to be experiencing these symptoms during an annual physical with my PCP a few years ago, he observed post nasal drip and suggested it was allergies and that I treat it with claritin. At first it seemed to respond to claritin (though not zyrtex), but over time I became unsatisfied with that answer. There didn't seem to be any seasonal rhyme or reason to my symptoms, and I felt like I was on an endless loop of taking claritin, then stopping, not being sure if it was even making a difference. I did eventually get allergy tests and found modest allergies to dust and pollen, which didn't feel like a smoking gun.  I then started seeing a natural medicine doctor who was much more willing to explore my symptoms via testing. The first thing that came back abnormal was elevated thyroid peroxidase antibodies/TPOs, 137 IU/mL vs a reference range of <9. At the same time my thyroid panel showed normal thyroid hormone levels. So it appears my immune system is attacking my thyroid even though it is working fine. I got a thyroid ultrasound at the time, it was clear, but with some abnormalities such that they suggested I get is scanned again in a year. These are certainly risk factors for a thyroid autoimmune disease, though my thyroid seems to be working fine for now.  From here my doctor considered celiac due to the murky thyroid/celiac links, so we did a panel. Results were as follows: TT IGA <1 U/ml, TT IGG <1 U/ml, deamidated gliadin IGA 24.6 U/ml, deamidated gliadin IGG <1 U/ml, IGAs 170 mg/dL. Readings greater than 15 considered high by my lab for the first four, my IGAs are within reference range. So basically just the deamidated IGA popped, but my IGAs are normal. I also notice on the tests that my thyroglobulin was high, 86.7 ng/ml vs a range of 2.8 - 40.9.  My doctor suggested that it certainly wasn't conclusive for celiac, but it was possible, and likely that I have some sort of gluten sensitivity. She suggested going gluten free and seeing how I felt as opposed to doing a biopsy. The best theory I can come up with is perhaps I am a silent celiac or just have a gluten sensitivity that doesn't produce immediate GI symptoms, but is still doing damage and over time has caused leaky gut. So now gluten is getting into my blood, and my immune system is attacking it but also mistakingly attacking my thyroid.  So that's what I did, went gluten free in October. It's been about four months, and I am really not feeling any difference. I still get the same symptoms that come and go. My bowel movements may be a bit more regular, but it was never a major issue before so I would consider that a minor improvement. I know that it can take a while to see improvements, and I am going to remain gluten-free and see how I feel. But I am definitely questioning whether I really understand what is going on, and am open to any thoughts or suggestions from the forum. Sometimes I wish I just went ahead with the biopsy before going gluten-free. While I would certainly be down to start drinking IPAs again ahead of a biopsy, you know, for science, I feel like at this point I would be throwing away four months of work and am better off staying the course and seeing what happens. But I'm really not sure.  I know there is a lot of thyroid knowledge on these boards, along with the celiac expertise, so I'm curious if this resonates with anyone's experience. And I'm interested in what sort of timelines people have experienced in terms of feeling improvements for some of these non-GI symptoms like chills, SOB, brain fog etc. Thanks in advance. 
    • cameo674
      Testing positive for antibodies, are there visible changes to the colon that could be seen without a biopsy?

      By cameo674 · Posted

      Does it taste like black licorice?  It said it was chewable.  I do not like that flavor.     Since the burn at the back of my throat is there everyday, I usually only take something when it is unbearable and keeping me from ADL especially sleep.  
    • Scott Adams
      Nandos improper preparion celiac childrens food

      By Scott Adams · Posted

      Your concerns about Nando's cross-contamination practices are valid and important for the celiac community. It's disappointing that Nando's does not have stricter protocols for children's portions, especially given the risk of cross-contact with gluten-containing items like garlic bread. Cooking gluten-free items on shared surfaces, even if cleaned, is not safe for individuals with celiac disease, as even trace amounts of gluten can cause harm. While the adult butterfly chicken may be a safer option, the inconsistency in practices for children's meals is concerning. It's frustrating that Nando's headquarters did not take responsibility, but sharing your experience raises awareness and may encourage them to improve their protocols. Consider reaching out to celiac advocacy organizations to amplify your concerns and push for better standards. Always double-check with staff and emphasize the importance of avoiding cross-contamination when dining out.
    • Scott Adams
      Mucus discharge

      By Scott Adams · Posted

      I had this symptom when I was diagnosed. Are you sure that your diet is 100% gluten-free?  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 has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):      
×
×
  • Create New...