Jump to content
  • Sign Up
  • Join Our Community!

    Do you have questions about celiac disease or the gluten-free diet?

threedee

It's Not celiac disease, So What Could It Be?

Rate this topic

Recommended Posts

What could be the root cause of my misery?

All the blood tests for celiac disease are negative, biopsy was also negative. All other blood tests are in normal range. Hypothyroidism is ruled out. I have been having depression, anxiety, poor memory and motivation problems for at least 12 years. I am sure some of the symptoms are not related to the original problem, but are likely caused by stress that was caused by the original problems (depression, lack of motivation, lack of energy).

After the biopsy I started gluten-free diet. This have resulted in following changes during about 1 month period:

- before I had bowel movements every 3-4 days, now mostly every day and sometimes I skip one day

- I am feeling hungry very often, which is a new feeling for me (I eat a lot of fruits and veggies to fill my stomach)

- I can now exercise without getting anxiety attacks (before 45min run/jog at 70-80% HRmax could cause problems)

- my max HR has increased from 195 (measured 1-2 years ago) to at least 200 (could be even higher) [i just had to test because I was enjoying running so much!]

- I started to get a lot of ideas and I felt like my brain had been unleashed

All of the above could be exlained by more healthy diet and more exercise, but I don't know:

- My diet already contained enough vitamins and nutrients

- I did low intensity exercise like walking regularly

- I ate usually full grain rye bread that has high fiber content (and 30-40% wheat), so I wasn't expecting that much faster bowel movements

- I have experimented with various vitamins and nutrients before, but I have never managed to get this strong reaction (Earlier I took C, most B, D, Mg, Zn and fish oil. I have also tested E, but it made me feel sick)

I don't want to be on gluten-free diet needlessly, but for now it seems to be working better than anything I have tried so far :D

Thanks,

threedee

P.S. In another thread I was asking about double blind gluten testing I could do home. That is still a plan, but not just yet.

Share this post


Link to post
Share on other sites

I say that it would be an awfully big coincidence if all of those positive changes were for any other reason than taking gluten out of your diet.

It is very likely that you have non-celiac gluten intolerance. Also, there are so many false negatives with celiac disease testing, that celiac disease isn't really ruled out despite those negative tests.

And I agree, if you have doubts about needing to be on the gluten-free diet, go ahead and eat gluten for a few days and see how it makes you feel. If you start feeling crappy again you'll have your answer! I think that for you to stop doubting, that is what you need to do.

Share this post


Link to post
Share on other sites

The dietary challenge *IS* a valid diagnostic test as well, and you seem to have a big-ol' POSITIVE on that one.

Share this post


Link to post
Share on other sites

I agree, if YOU need to assure yourself that the gluten-free diet is what is causing the more positive changes in your life even with the negative medical test, go ahead eat gluten see how you feel, if you have no changes then great for you, if however you again start to expirience the setback and other issues you had before then you have to decide if you have proven to yourselfwhats going on rather than prove it to the medical community.... its not their body and not their life and personally I dont believe they have one iota of actual compassion about what people go thru.

Share this post


Link to post
Share on other sites

I agree with what has been said. There are false negatives with traditional celiac testing. Gluten can be damaging your body for some time before the antibodies show up in your blood and the damage is observable in your villi. I've certainly read a number of people here who had negative tests, continued to eat gluten (and feel crappy), then were tested again and were positive. Why go through that?

You can challenge with gluten and see how you feel. I won't get into how one could doubleblind this. It seems like it would be difficult. The food would have to taste the same either way. To be doubleblind, the person giving you the food would have to not know if it had gluten in it or not either. Theoretically, you would have to have no contact with anyone that would know whether your food had gluten in it or not. Sounds complicated.

If you think your mind might be seeing an impact from the elimination of gluten that isn't there, you can always be tested with Enterolab. Their testing is more sensitive. I thought I felt better off gluten, but I wasn't completely better and I had a skeptical husband who wasn't really onboard with the program. Positive test results from Enterolab convinced us both. It also helped me to confirm that, yes, I do have a problem with dairy and egg (I had been largely avoiding it, but I wasn't obsessing about bits that made their way into restaurant meals) and discovered I had a problem with soy that I didn't even suspect.

Share this post


Link to post
Share on other sites
Vit. E gives me gluten symptoms something fierce from some sources. I suspect it has wheat germ oil in it.

Actually, you are right. A lot of vitamin E is derived from wheat germ oil. And often they use soy as well. If you suspect your vitamin E is a problem, you need to check with the manufacturer to find out what it is derived from.

Share this post


Link to post
Share on other sites

Thanks for replies! I am definitely continuing gluten-free diet for a while. If I don't get any setbacks that way I'll then do some gluten exposure testing. First I'll try double blind with gluten/wheat filled and "placebo" capsules. There's a limit how many capsules I can eat, so final option is to test with real food if I don't get any reaction from capsule test.

I still think the problem could be unrelated to wheat/gluten: Maybe I didn't get enough nutrients from food after all and leaving out grains made more room for the "good stuff", like fruits. Another option is low bile output. Bowel movements may get more frequent with less fiber in diet if bile output is too low.

Well, we will see :-)

threedee

Share this post


Link to post
Share on other sites

You can be gluten intolerant even if you don't have celiac. This can cause just as bad health problems. Get a stool test from enterolabs. You can be gluten free for this test.

Share this post


Link to post
Share on other sites

My colleague offered her gluten-free sandwich to me a week ago: It seems I might be having issues with grain also :(

I have been doing some hard running exercises now that I can run, but either I overdid those or the gluten-free sandwich had some negative effects on me: First my bowel movements skipped two days, then one. Now back on once a day. Resting HR was also higher, now back to "normal" (5 bpm lower than never in 12 years...). For all that I know about training physiology, it didn't look like effects of too hard training.

Still one month to go before I see a doctor... She is a functional medicine doctor and knows about IgG allergies, stool tests, etc. so I am hoping she is good.

BTW: I have now started my own web site where I will try to help others with undiagnosed ("subclinical" aka "there is nothing wrong with you", as doctors like to call them) health problems. Se my signature.

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.


  • Top Posters +

  • Upcoming Events

    • March 24, 2019 Until March 27, 2019
      0  
      NEW ORLEANS GOURMET GLUTEN-FREE mini GETAWAY    March 24 ~ 27, 2019   We have arranged a fun and Gluten-free food filled mini in the city known for it's food and fun.  We have arranged to eat many of the famous dishes that aren't usually Gluten-free at a few of the World Renown restaurants.   Staying at the Royal Sonesta Hotel on Bourbon Street in the center of the French Quarter, you'll be able to enjoy the ambiance of the city at all hours.   Our itinerary will include a Luxury Coach tour of the city and surrounding area - Admission to The National World War II Museum, including the Tom Hanks" 4D film "Beyond All Boundaries" - an exciting Airboat ride and tour through the Bayou.      This it the 3rd time we have visited New Orleans and it has always been well attended, so join us even if you've been there before.  Check out our website for the complete itinerary and cost.    Due to contractual obligations we must have 20 participants by October 31, 2018 to make this a go.      If you have any questions just give us a call at 410-939-3218.  Bob & Ruth info@bobandruths.com (410) 939-3218
    • March 27, 2019 04:00 PM Until 08:00 AM
      0  
       
       
       
      Celiac Emotional Healing Support Group
       
       
       
      Again you are invited to join Johnny Patout, LCSW for Baton Rouge's first emotional healing support group meeting to assist those living with celiac disease manage the emotional challenges so many of us face. Most often the emotional disturbances include depression, disinterest in normal activities, insomnia, grief, mood changes, anxiety, inability to concentrate, extreme concern about managing a gluten-free lifestyle and other emotional and behavioral challenges.
       
      The professionals at Jamestown Avenue Counseling Center created the emotional healing support group to give us a safe place to begin to process our emotions and support each other as we heal emotionally while managing celiac disease and the resulting autoimmune disorders.
       
      The emotional healing support group meets every Thursday, 6:00-7:00pm, at the Jamestown Avenue Counseling Center of Baton Rouge. Jamestown Avenue Counseling Center is located at 4637 Jamestown Avenue, Baton Rouge, Suite B-1. Suite B-1 is upstairs.
       
      The support group is free and open everyone managing celiac disease. For more information: emotionalhealingforceliacs@hotmail.com
    • March 30, 2019 Until March 31, 2019
      0  
      Nourished Festival is a family-friendly event with 10 locations across the US. Attendees will be able to sample food, health and beauty products, meet with companies, learn about the most current food lifestyles, receive coupons and attend educational sessions with industry experts. 
      Nourished Festival, managed by The Nourished Group and presented by Enjoy Life Foods, is the largest gluten-free, allergy-friendly and specialty diet event in the US, with 10 locations including.
      ABOUT THE NOURISHED FESTIVALS
      Managed by The Nourished Group, formerly The Gluten Free Media Group, The Nourished Festivals are the largest and fastest growing special diet consumer events in the United States. Started in 2007, the events have expanded from one to ten cities throughout the country. The festivals cater to anyone looking to lead a healthier lifestyle or those who follow a specialty diet due to autoimmune conditions, food sensitivities, allergies or intolerances. Offerings including Paleo, Keto, Plant-Based, Gluten-Free, Allergen-Friendly and Nut-Free products. The events provide the opportunity for attendees to sample and purchase new products, receive coupons, meet with brand ambassadors and attend educational classes with industry experts. For more information, visit http://www.nourishedfestival.com 
       
  • Member Statistics

    • Total Members
      86,791
    • Most Online
      4,125

    Newest Member
    udayshankar
    Joined
  • Forum Statistics

    • Total Topics
      112,059
    • Total Posts
      956,643
  • Who's Online (See full list)

  • Forum Discussions

    Hi, Thanks for your answer! Unfortunately I have to follow the MAOI diet for as long as I'm taking the MAOI, so essentially nobody's going to be inviting me round to dinner from now on… This is a bit of a shock. I don't really have any clear-cut symptoms that I would've considered worth going to the GP about. I mean I'm always tired and I have a bit of IBS and so on but generally I put that down to the other things wrong with me and the medication I have to take for them (mostly the bi
    Thanks Posterboy, that was interesting information.  I believe that I had read something elsewhere about tetracycline, at least, being used instead of, or along with, Dapsone for severe or refractory cases of DH. Unfortunately, even if I had medical insurance (which I do not), and had a regular doctor who was even willing to recognize and accept my condition for what it is, I don't know what kind of luck I would have in persuading that hypothetical doctor to give me a particular and non-sta
Healthysquirrel,  Please have your doctor check your Vitamin D level!   Vitamin D deficiency is related to vertigo https://www.ncbi.nlm.nih.gov/pubmed/27386060 Vitamin D can help with high IgE https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5263170/ Low vitamin D and low ferritin are tied https://www.ncbi.nlm.nih.gov/pubmed/29385099 Dry eye problems including blepharitis can be helped with vitamin d and vitamin a https://www.ncbi.nlm.nih.gov/pmc/articles
  • Blog Entries

  • ×
    ×
    • Create New...