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

New And Feeling Kind Of Lost


Legerity

Recommended Posts

Legerity Newbie

Hello,

I've been trying to find out what is wrong for me for a few years now, but decided a while back that gluten was not the problem. Now I'm starting to question my conclusion, as my digestion had begun to heal over a 6-8 week period while following a low-carb diet that contaiend no gluten. As soon as I went off of this, my problems started returning full force. They were never fully healed, which is why I didn't think gluten was the problem, but there was certainly improvement which has been completely undone now that I'm eating my regular diet.

These are my symptoms:

-Weight loss (I lost about 20-30 pounds last year when it was at its worst, looked anorexic)

-Feeling full very quickly when eating

-Pain/bloating after eating (upper GI)

-Constipation

-Sometimes small "specks" in my stool, looks like something undigested?

-Headaches

-Fatigue

-Joint pain (recurring shoulder pain for years, sensitive knees

-Chest pressure/palpitations

-Mood change after eating (feeling down, lethargic)

-Anxiety

They've run tests and never really found anything except what they thought was mild reflux. I used nexium in the past and it did nothing for my symptoms. I get more bloating rather than reflux. My low-carb diet attempt really did start making a difference in my digestion, but I still felt problems. I think I just assumed that I would completely heal right away and didn't give it enough of a chance. But I really feel gluten is doing bad things for me, I just have not been tested. This also makes me feel like it is easy to justify eating it, because I don't have 100% proof that it is the problem. So these are my questions:

1) Would the Enterolab gluten sensitivity test (the $99 one) be sufficient? It seems like the full package will not give me any extra information as to whether or not I really need to cut out gluten.

2) Is it common to have self doubts about this? I feel sometimes that it's in my head and it's just stress or emotional issues that are causing my body to react. Then I convince myself "oh you've stopped gluten for periods of times so you know it isn't really the issue". But I can't deny how many symptoms I've had since starting to eat it again this time.

3) Is it normal to sometimes feel fine after eating gluten, and sometimes to feel horrible? That's how it seems to be for me.

Thanks for the feedback!

Brian


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



Celiac.com Sponsor (A8-M):



Black Sheep Apprentice

Hello,

I've been trying to find out what is wrong for me for a few years now, but decided a while back that gluten was not the problem. Now I'm starting to question my conclusion, as my digestion had begun to heal over a 6-8 week period while following a low-carb diet that contaiend no gluten. As soon as I went off of this, my problems started returning full force. They were never fully healed, which is why I didn't think gluten was the problem, but there was certainly improvement which has been completely undone now that I'm eating my regular diet.

2) Is it common to have self doubts about this? I feel sometimes that it's in my head and it's just stress or emotional issues that are causing my body to react. Then I convince myself "oh you've stopped gluten for periods of times so you know it isn't really the issue". But I can't deny how many symptoms I've had since starting to eat it again this time.

Sorry I don't know the answer to most of your questions, as I'm so new at this, too. I've been g.f. for just under 1 month now, and I know what you mean about the self-doubt thing, as it's happening to me. Because for almost 2 weeks, nothing happened. Then suddenly, a few of the major health problems I was having started to improve, and I thought, voila! That's it, it's definitely a gluten problem! And this improvement even happened while I know I was accidentally ingesting tiny amounts of gluten, due to ignorance (like eating things made with non-certified g.f. oats; french fries cooked in the same oil as breaded onion rings, etc.). But lately, after having become much more educated (although I know I still have a long way to go) and careful about everything I eat, some of the old symptoms are returning. So it's a bit discouraging, and the last few days I've been going through a little self-doubt as well.

However, being on this Board has really, really, helped! Yes, the info. about g.f. foods is a huge help, but so are the accounts of all these different people who are going through so many different things. Every person is different, and yet due to the huge variety of symptoms and problems different people are having, I can read their posts and say, "That's just like me! Those are my symptoms, too. That's what I'm going through." So thanks to those posts I've read, I now know that often times things get worse before they get better. Things can go back and forth, from better to worse to better again, before finally stabilizing. So don't give up, and don't doubt yourself. I think you've already proven to yourself that gluten is at the root of your health problems. I'm sure others will be able to answer your questions, as they've been at this much longer than I!

As for the testing, I haven't had it done, as I'm uninsured and my doc just had me do the challenge diet. But from what I've read here, if you want to do the celiac panel, you do have to be eating gluten. I've been told however, that you can be off gluten for close to a year and still do the Enterolab test, although i have no idea which one. There's another question for the more experienced folks!

Anyway, I just wanted to address the things you mentioned that I've also experienced, and hopefully encourage you somewhat.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,991
    • Most Online (within 30 mins)
      7,748

    ZENken
    Newest Member
    ZENken
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Wheatwacked
      Have faith, you will survive. I get mine from Pipingrock.com.  500 capsules of 10,000 IU for $22.  That is almost two years worth for me.  250 caps 5000 IU for $6.69 if you only take 5,000 a day.  It's like half the price of Walmart.
    • Wheatwacked
      Testing can't alone be trusted.  Else why would it take so many years of testing and retesting and misdiagnosis to finally be told, yes you have Celiac Disease. As to what to eat, I like pre 1950 style food.  Before the advent of TV dinners.  Fresh food is better for you, and cooking from scratch is cheaper.  Watch Rachel Ray's 30 Minute Meals for how to cook.  Keep in mind that she is not gluten free, but her techniques are awesome.  Just use something else instead of wheat, barley, rye. Dr Fuhrman is a ex cardiologist.  His book Eat to Live and Dr Davis' book Wheatbelly were instrumental in my survival.
    • Scott Adams
      If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch--thanks for the tip about Dupixent, and I've added it to the article:  
    • Scott Adams
      I just want to clarify that what I posted is a category of research summaries we've done over the years, and nearly each one shows that there is definitely a connection to celiac disease and migraine headaches. The latest study said: "the study did indicate some potential causal associations between celiac disease and migraine with or without aura, as well as between migraine without aura and ulcerative colitis...this study did not find evidence of a shared genetic basis..." Anyway, there is definitely a connection, and you can go through more of the articles here if you're interested: https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/migraine-headaches-and-celiac-disease/
    • SusanJ
      Two months ago, I started taking Dupixent for dermatitis herpetiformis and it has completely cleared it up. I can't believe it! I have had a terrible painful, intensely itchy rash for over a year despite going fully gluten-free. See if your doctor will prescribe Dupixent. It can be expensive but I am getting it free. When the dermatitis herpetiformis was bad I could not do anything. I just lay in bed covered in ice packs to ease the pain/itching and using way too Clobetasol. Dapsone is also very good for dermatitis herpetiformis (and it is generic). It helped me and the results were immediate but it gave me severe anemia so the Dupixent is better for me. Not sure if it works for everyone. I cannot help with the cause of your stress but from experience I am sure the severe stress is making the celiac and dermatitis herpetiformis worse. Very difficult for you with having children to care for and you being so sick. Would this man be willing to see a family therapist with you? He may be angry at you or imagine that your illness is a psychosomatic excuse not to take care of him. A therapist might help even if he won't go with you. Also do you have any family that you could move in with (with the kids) for a short time to get away? A break may be good for you both.
×
×
  • 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.