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

Help...too Much Going On


widget

Recommended Posts

widget Newbie

I am feeling very, very overwhelmed. I have been gluten-free for over a year, as well as dairy and egg-free, and I am extremely vigilant about my diet. However, I am having stomach aches at least every other day, and I am so fatigued that I could just sleep for days...in fact, I find that I start a project and then just sit on my bed for hours. I don't know who to see. I saw another gastoenterologist recently and he ran a CBC and basic blood panel on me, plus a celiac disease blood workup (his response was, "what do you think we should do? Can you afford to have me scope you to check for cancer?". And I specifically asked him, will the blood test be accurate for celiac disease since, one, it costs $300 and I have no insurance, and two, the last test I had was negative, and three, I understand that if you've been off gluten, it will not be correct. As expected, it came back negative. However, my CBC was off the charts - I've had ITP for years, so it was not a shock, but it still very worrisome: platelets 37k, WBC 3, Hemo 33.4. He immediately passed me back to my hematologist, who had done a bone marrow aspiration last year - and told me to have a liver and spleen ultrasound once again. I am also going to see a nutritionist next week but frankly, don't expect much - she is not well-versed in gluten intolerance or celiac disease. I've been having a hard time keeping my weight up. I am 53 and over the years have dealt with depression, anemia, thinness, rashes, headaches, stomachaches, bruising & pettechia, brain fog, clumsiness, difficulty conceiving (and a miscarriage), early onset menopause, and very dark circles under my eyes. In addition, I have asthma and allergies (both food and environmental). I've also had 2 right breast lumpectomies (benign) and my current mammo shows 5 "suspicious spots" on my left breast.

I am at my wit's end. WHO do I see??? I wonder if I should try someone in the homeopathic realm instead of "normal" doctors (who have been of no help whatsover). I don't know which way to turn. I hope someone can give me some advice or reassurance, or recommend a good doctor in the Gainesville, FL area (I had asked for recommendations on the "doctor" forum, but the one who was recommended has not been of any help).

Thank you in advance.


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



Celiac.com Sponsor (A8-M):



Lisa Mentor

I am sorry that you are going thought such difficulties. Most of us are not doctors, and I would encourage your to continue in your search with medical professionals.

It's not necessary for a doctor to recommend the gluten free diet. It might be something that you might want to try to see if you can get some relief.

Here is some support information:

Open Original Shared Link

widget Newbie

Thanks for your response. Yes, I've been gluten-free for almost 2 years - I eat organically as much as possible, and avoid all processed foods. I also have to avoid all dairy, eggs, nuts, citrus, melon, turkey, corn and more. I have asked 2 different doctors to prescribe a comprehensive food allergy panel and they both said they wouldn't - so I will need to find an allergist in addition to everyone else...more money, of course, which is one reason I need to figure out who can help me the most and actually understand the correlation of celiac disease, ITP, etc. and not treat just one symptom.

I feel like I can't eat without reacting, can't sleep without a sleeping aid, and feel like crap every single day. I jog but it makes me cough (I cough all the time, actually), I try to take care of myself and avoid stress, and I attempt to research/read everything I can - this site has been very helpful..if nothing else, just to know that I'm not alone!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      126,204
    • Most Online (within 30 mins)
      7,748

    DreDre
    Newest Member
    DreDre
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.2k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • kopiq
      I also have food particles left on toiet paper when i wipe and my stool is light yellow not absorbing fats. I urinate about 15 times a day and have very sticky snot,dry throat.
    • kopiq
      Hi all, I was diagnosed by blood work about 2 months ago and have since went on a strict gluten free diet. I have an endoscopy in January and the GI dr said nothing about staying on gluten for it; hes aware i went no gluten. starting to heal symptoms include: (this is huge) sensation coming back to genitals and when having a bowl movement. everything has been numb for a long time down there including lower belly button area. good size (not abnormal) bowel movements once a day or every two days. small dot size wart just fell off my finger that was there for years. have not broke out with a cold sore this winter (every winter prior for years i would develop a cold sore on my lip) Ongoing issues I don't sweat. not from my hands, or armpits or feet. I do not get butterflys in stomach. my hands have been so dry for years ive been using a crack cream as they crack and bleed very severely in the fall and winter.  (since going gluten free ive not used crack cream but they are still very very dry and chapped/flaky, no sweat or moisture in palms of hands at all. I dont crave food. i have no cravings at all, not for pizza, ice cream , nothing. my cravings are dead. smell of foods kinda make me hungry, but my stomach blocks it. pins needles in feet get weak legs standing up from sitting and dizzy, things almost turn black. i cannot tolerate veggies or vitamins. Iam vitamin D deficient according to my Dr and Ive tried vitamin D pills. they give me a massive migraine for 8 hours and upset my stomach. the heat from the direct sun make me extremely tired to the point of wanting to pass out. again i don't sweat. broccoli gives me a migraine headache as well. mushrooms, bell peppers burn my stomach. fruits burn my stomach, fats (peanut butter, any oil or fat from meats make me sick to my stomach for a couple hours or longer. salt and pepper burns my stomach. all these issues cause pain at my belly button area and expand to the rest of my upper stomach and sides the more i ingest through out the day. I currently eat bland basmati rice, chicken, pork chops (fat trim), boiled russet potatoes no skin for three meals a day. my snacks are gluten free ground buckwheat flour pancakes. (just water, no oil , salt, dairy.) how am i to get vitamins in my system if i cannot tolerate them in my stomach? i mentioned epidermal vitamin patchs but dr said no. why cant i stand the heat from the sun ? why cant i sweat? thanks for any info.                
    • trents
      Because you have significantly reduced your gluten intake over a considerable amount of time, it is likely that you will test negative on the antibody tests. However, if the $112 for the Quest test is not a burden, it wouldn't hurt to try. It tests for total IGA (to ascertain if you are IGA deficient) and tTG-IGA. If total IGA is deficient, it can result in false negatives in other IGA tests. The tTG-IGA is the single most popular test ordered by physicians. The Quest test is not a complete celiac panel by any means (refer to the linked article above) but it might be a good place to start. Personally, I think you know enough to conclude that you need to get serious about avoiding gluten, whether you have celiac disease or NCGS. Human nature being what it is, however, many people seem to need an official diagnosis of celiac disease in order to stay on the bandwagon. Otherwise, they seem to rationalize cheating on the gluten-free diet. And there is this misconception out there that NCGS is inconvenient and uncomfortable but not harmful so it's okay to cheat. The more we learn about gluten-related disorders the more they seem to not fit into our neat little black and white categories. By the way, celiac disease is not a food allergy. It is classified as an autoimmune disorder.
    • More2Learn
      These responses are all extremely helpful, ty.  Really good reminder about omega 6.  I also know I'm low in zinc; I took the zinc test where I drank it on a spoon and couldn't taste it.  To that end, I try to eat a lot of oysters.  I do think it would be a good idea to get the blood test.  Two questions: 1-  Is there any reason you wouldn't recommend that I just buy and take a test like this as a first step? 2- I've been somewhat gluten free since ~Jan 2023 (technically organic, gluten free, soy free, light on dairy).  I eat a lot of meat, vegetables, rice -- a common breakfast for me is three eggs and a sausage link, and I can't remember the last time I had a sandwich or bread.  However, because in my mind I didn't think I had an allergy, and I more was doing gluten free to avoid artificially iron-enriched foods, I do make exceptions.  I'll eat breaded calamari.  When my Dad visits, I split mozzarella sticks with him because he loves them so much.  I'll eat the "gluten sensitive" items at a restaurant and if they asked, "is cross contamination ok?",  I always said yes.  Based on that, since I never probably fully eliminated gluten, but it was significantly reduced... is that good enough to take the blood test?  Because the pain in my side gets SO bad (really sometimes I can't function, and I absolutely thought I was dying), I am hesitant to do the gluten challenge.  Would it make sense to take the test, and if it's negative, then consider doing the challenge and seeing if I can deal with eating the bread every day? Thanks again!
    • Yaya
      For me, with osteoporosis, Celiac and more than 1 heart condition, the slower, safer route is preferable.  I'm on 5 meds per day.  Too much of anything can disturb absorption of this or that. Have a Happy Thanksgiving.  I'm gone for a few days.  
×
×
  • Create New...