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

What To Do Now?

lizk

Recommended Posts

lizk Rookie
lizk
Posted

I guess I am just mostly venting because I'm frustrated that I can't figure out what is wrong with me. Last fall I was having gastro issues (bloating, D, cramping) and also some skin issues - severly itchy bumps that would come and go. I went gluten-free (I realize now that was dumb before seeing a doctor) and the GI issues resolved almost completely except I was still having loose/soft stools and occasional undigested food. I went to a GI doc because of these issues (at this point it had been going on for about 3 months and I also still had random itchy bumps) just to be sure there was nothing else wrong and she couldn't find anything. Obviously she didn't do any celiac tests because I was still gluten-free at that point. She did say I had a slightly elevated folate level which could indicate bacterial overgrowth and also I was slightly deficient in vitamin D. Ironically by the time I had my GI appointment (literally that day), I had a "normal" stool and did for the couple days after. I had also cut out dairy for the past month or so.

So, I decided to start eating gluten again because I really didn't have any reason not to. Yes I felt better without it but I also thought maybe it was just a virus or bacterial infection or something that took a long time to get rid of. I am not so concerned with a definite diagnosis if it is celiac but I am more concerned with some diagnosis if it is NOT celiac if that makes sense, so I am back on gluten just to try to rule it out as a cause. I am still off dairy because I don't want to add both back in at this point, although I have had a little greek yogurt and small amounts of hard cheddar.

So here's what has happened over the past 10 days eating gluten. I have no pain really, but some bloating. I don't know what is "normal" for someone's stomach to bloat after they eat but in the morning my waistline is about 27 inches and then after breakfast it is about 29 1/2 - 30 inches. I have been eating Cream of Wheat for breakfast but this morning I had just a piece of whole wheat toast and a smoothie and my tummy was 30 inches.

I still have "loose" stools and I only go in the mornings. Usually the first one is just loose and unformed and then I may go again once or twice and those are considerably looser, and usually very thin.

I still have the itchy bumps but they are coming in different forms now. I still have the tiny blistery types ones occasionally but I am now getting bigger more bug bite-looking ones. I have two on each arm now and had one on each side of my abdomen earlier this week. They do not look like typical DH but I have no idea what they are. They have sort of like a little indentation in the middle and after they itch/burn they are also sore.

So I guess I am just confused and a little worried because obviously something is not right. It doesn't appear to be celiac but also there doesn't seem to be anything else wrong that shows up on any tests. I am temtped to go back to being gluten-free but even then I had the loose stools and tiny bumps. Maybe I didn't wait long enough? But if it is gluten wouldn't I be having more severe reactions now?

I know this is all rambling but it helps to just get out my frustrations!

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

Celiac.com Sponsor (A8-M):


Metoo Enthusiast
Metoo
Posted

I would consider seeing a dermatologist at this point, your rash does sound like DH. I would ask a Dermatologist to biopsy it...I would tell them you had GI issues for months/years, and that they were unable to determine a cause, and that you went gluten free...and now that are adding it back in your rash is changing/worsening. Ask them to biopsy it (they should biopsy it along a active lession). I would also ask the dermatologist to do the blood test for celiac, a FULL panel.

lizk Rookie
lizk
Posted
  • Author

I would consider seeing a dermatologist at this point, your rash does sound like DH. I would ask a Dermatologist to biopsy it...I would tell them you had GI issues for months/years, and that they were unable to determine a cause, and that you went gluten free...and now that are adding it back in your rash is changing/worsening. Ask them to biopsy it (they should biopsy it along a active lession). I would also ask the dermatologist to do the blood test for celiac, a FULL panel.

Thanks for your advice! And thank you for reading my long post! :)

I think I will try to make an appointment with a dermatologist.

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. knitty kitty
      - knitty kitty replied to sadiec123's topic in Coping with Celiac Disease
      4

      mental health struggles

      How are you doing, @sadiec123? Did you get through the holidays alright? Have you been checked for nutritional deficiencies? Many newly diagnosed Celiacs are low in Vitamin D and many of the B vitamins like thiamine. Thiamin insufficiency can cause weight loss and loss of appetite (anorexia) as well as affect mood. Benfotiamine has been shown...
    2. knitty kitty
      - knitty kitty replied to Sarah Marie's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Bloodwork Help for my Teen

      I agree, @Sarah Marie, it's best to keep eating gluten and get on the doctor's cancellation list. Some people have extreme symptoms when reintroducing gluten after a brief abstinence. Be sure she consumes six slices of bread or gluten-y equivalent a day in the two weeks prior to the endoscopy. There are different amounts of gluten in different products...
    3. knitty kitty
      - knitty kitty replied to emily 1's topic in Coping with Celiac Disease
      11

      Black Pepper Reactions

      Those are links to articles on this site. I don't do Instagram either. https://www.celiac.com/celiac-disease/cross-reactivity-between-anti-gliadin-antibodies-and-proteins-in-spices-may-trigger-symptoms-in-some-people-with-celiac-disease-r5900/ And https://www.celiac.com/celiac-disease/beyond-gluten-exploring-lesser-known-triggers-and-cross...
    4. emily 1
      - emily 1 replied to emily 1's topic in Coping with Celiac Disease
      11

      Black Pepper Reactions

      Wow! That's really good information. I have noticed that my Celiac symptoms are ever increasingly seeming like allergy symptoms as well. Stuffed up head, horse throat post navel drip symptoms. I'm afraid I'm not sure I understand how to follow the links you sent for the expanded version of non-histamine diet? Are those Instagram addresses? Because I don't...
    5. knitty kitty
      - knitty kitty replied to emily 1's topic in Coping with Celiac Disease
      11

      Black Pepper Reactions

      Canker sores can be more frequent if deficient in zinc, Thiamin B1, Riboflavin B2, Pyridoxine B6, Cobalamine B12, Folate B9, iron and Vitamin D. Following a low histamine paleo diet helps heal. Mast cells in our body make histamine and release it as a part of the inflammation process. Foods that contain high histamine levels can make inflammation...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      127,060
    • Most Online (within 30 mins)
      7,748
    Steve58
    Newest Member
    Steve58
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      69.9k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • knitty kitty
      mental health struggles

      By knitty kitty · Posted

      How are you doing, @sadiec123?  Did you get through the holidays alright?    Have you been checked for nutritional deficiencies?  Many newly diagnosed Celiacs  are low in Vitamin D and many of the B vitamins like thiamine.  Thiamin insufficiency can cause weight loss and loss of appetite (anorexia) as well as affect mood.   Benfotiamine has been shown to promote intestinal healing and improve mood.
    • knitty kitty
      Bloodwork Help for my Teen

      By knitty kitty · Posted

      I agree, @Sarah Marie, it's best to keep eating gluten and get on the doctor's cancellation list.  Some people have extreme symptoms when reintroducing gluten after a brief abstinence.  Be sure she consumes six slices of bread or gluten-y equivalent a day in the two weeks prior to the endoscopy.  There are different amounts of gluten in different products.  Chewy pizza crust and artisan breads have more gluten than cookies and cakes. Keep us posted on your progress!
    • knitty kitty
      Black Pepper Reactions

      By knitty kitty · Posted

      Those are links to articles on this site.  I don't do Instagram either. https://www.celiac.com/celiac-disease/cross-reactivity-between-anti-gliadin-antibodies-and-proteins-in-spices-may-trigger-symptoms-in-some-people-with-celiac-disease-r5900/ And  https://www.celiac.com/celiac-disease/beyond-gluten-exploring-lesser-known-triggers-and-cross-reactivities-for-celiac-patients-r6350/  
    • emily 1
      Black Pepper Reactions

      By emily 1 · Posted

      Wow! That's really good information. I have noticed that my Celiac symptoms are ever increasingly seeming like allergy symptoms as well. Stuffed up head, horse throat post navel drip symptoms. I'm afraid I'm not sure I understand how to follow the links you sent for the expanded version of non-histamine diet? Are those Instagram addresses? Because I don't do Instagram. Thank you so much for that reply. To my knowledge, I'm okay on all of those things. Although I don't think that I've been tested for zinc. I do know when the flu's going around I try taking zinc mixed with quercetin but that seems to put my autoimmune into overdrive. As does some of these over-the-counter things which are recommended for traveling. To boost the immune to prevent sickness. Also things like echinacea and elderberry which you would think would be innocuous
    • knitty kitty
      Black Pepper Reactions

      By knitty kitty · Posted

      Canker sores can be more frequent if deficient in zinc, Thiamin B1, Riboflavin B2, Pyridoxine B6, Cobalamine B12, Folate B9, iron and Vitamin D.   Following a low histamine paleo diet helps heal.  Mast cells in our body make histamine and release it as a part of the inflammation process.  Foods that contain high histamine levels can make inflammation worse.  Mast cells get "itchy triggers" and can release histamine when exposed to some spices and foods.  The vitamins listed above are also required to clear histamine along with Vitamin C.  Following a low histamine diet like @Mari and @Blue Roanand keeping a food journal like @Blue Roan does are excellent ways to travel on our Celiac journey.
×
×
  • Create New...