Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

What To Do Now?
0

3 posts in this topic

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!

0

Share this post


Link to post
Share on other sites


Ads by Google:

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,374
    • Total Posts
      920,570
  • Topics

  • Posts

    • https://www.facebook.com/groups/SingaporeCeliacs/
    • Today was the big day when I went to the GI and this is the first time I have felt heard about and well taken care of.  I told him about the two celiac blood tests  (in my first post) normal, he said that often happens, even with people who do have celiac and he needed to see the report and pictures from my endoscope.    I had filled out the appropriate Kaiser paperwork for Sutter to send all my medical records, but they ended up sending a celiac disease to me with the records, which Sutter said they could not use.  We also talked about gluten sensitivity v. celiac, and he said a lot of people are sensitive to gluten even if they don't have celiac. He said that my symptoms sound like classic IBS, which can be caused by any number of things.  He asked if I would try the FODMAP diet, which limits certain foods and requires no gluten due to what being He said my symptoms sound like classic IBS, which he said can be caused by any number of things, including gluten sensitivity.  He has asked if I would try the FODMAP diet, which has restricted foods as well as no gluten because most gluten products have wheat in them.  So, since I am planning on going gluten free anyway, and I don't want another endoscope or blood tests if absolutely necessary, I am going to try the FODMAP diet and see what happens. I filled a consent form at the GI office today to have all my records sent to him so he can view the endoscope pathology report and photos.  I have an appointment with a Registered Dietician on September 30, and follow up appointment the GI in 4 months. 
    • gluten-free andee, according to an article on celiac.com  that talks about this subject see this link http://www.celiac.com/articles/24406/1/Celiac-Diease-and-Other-Autoimmune-Diseases-Equals-Low-Inflammatory-Diet/Page1.html Quoting the author "In the author's personal experience, a gluten-free diet has many limitations. The reactivity between alpha gliadin and corn, millet, oats, rice and dairy has been denounced as invalid by gastroenterologists and celiac disease researchers. While at a medical school in Missouri, biopsies did not show improvement in villous atropy until all alpha gliadin sources and corn, millet, rice and oats were removed from the diet."  Note this research is two years old but hilites the problem with non-gluten rice protein that you are having. It is the alpha gliadin sources that it causing the cross reactivity you are experiencing when you eat rice protein's. She says quoting "Celiac disease has gotten the most attention in antibody research, but the current data on cross-reactivity of antibodies is allowing a better understanding of gluten sensitivity. Antigen reactivity to alpha-gliadin can trigger immune attacks on many individuals beyond those with positive DQ 2, DQ 8 and TTG test results. She goes on to say "A low inflammatory diet customized to each person through testing for cross-reactivity or elimination diet protocols is needed to restore a state of health and well-being."  which sounds exactly like what you are doing. If you are still having problems after elminating rice a 30 day elimination of all the alpha gliadin proteins might be in order.  Corn is a common reactivity problem I hear with a gluten allergy from my friends as well as the obvious lactose problems that can be common among celiacs.  But rarely do you hear Rice allergy's brought up in context of a gluten allergy. I am glad you are making progress on finding your triggers. Read the whole article for yourself to see if there are nuggets of truth I did not highlight in my response. I hope this is helpful. Good luck on your journey to health. Posterboy,
    • One other thing - you might be able to tolerate some dairy if it's only the FODMAPs problem. I discovered that many cheese such as cheddar have effectively no lactose. And my wife sometimes makes 24 hour yoghurt, which also has effectively no lactose. Those have been fine for my tummy.
    • I'm new to the forum, so this topic may already have been covered....please forgive me, if that's the case.  I am in the beginning stages of guiding the development of a 504 plan to file for my 6th-grade daughter who was diagnosed with Celiac Disease 2 weeks ago. The diagnosis was made with a biopsy. My first question...A 504 is what's necessary....not just the IHCP, correct or no? I have the Physician's Statement & the Medical Evaluation report from our GI specialist. What else do I need to have at the ready? The team has requested we go ahead and write the IHCP & then include it with the 504.  And my second question...What accommodations have others found relevant to include on the IHCP  & 504? I just watched a 504-Plan webinar I found on this forum & it recommends the following: -access to gluten-free food in classroom & cafeteria - excused absence from activities that use gluten-containing foods or materials -  prevent cross-contamination in school food service - use of microwave to heat personal meals -  bathroom priveleges Is there anything I need to consider adding? My daughter does prefer eating school meals rather than packing a lunch from home & I am concerned about special events, overnight field trips etc. My learning curve is steep. What am I missing? Teach me, please & thanks so much! This forum has already helped me tremendously these past few weeks.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,450
    • Most Online
      1,763

    Newest Member
    Chellygirl
    Joined