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

Is This Posible?

zebaldwin

Recommended Posts

zebaldwin Explorer
zebaldwin
Posted

I haven't posted on here in a while.

I have had a lot of health issues over the past year or so, and decided to try gluten free on my own (negative blood work)

I was gluten free for over 3 months with no (noticeable) difference, so I went off the diet. I have been off for about a month-6weeks, and most of that felt a little better, noticeably better...but only noticeable now because for a week I have had all my exact same symptoms (bad brain fog, weakness, some digestive issues, etc).

Is it possible that gluten free really was helping? I just dont understand how I felt great while eating gluten for almost 6 weeks.

I am so lost as to what to do. I can't think of much else that changed in the last 6 weeks (I did stop taking a high-dose of vitamin D for a deficiency...per doctor's orders.)

I would appreciate any input on this issue. thanks!

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

Celiac.com Sponsor (A8-M):


love2travel Mentor
love2travel
Posted

I haven't posted on here in a while.

I have had a lot of health issues over the past year or so, and decided to try gluten free on my own (negative blood work)

I was gluten free for over 3 months with no (noticeable) difference, so I went off the diet. I have been off for about a month-6weeks, and most of that felt a little better, noticeably better...but only noticeable now because for a week I have had all my exact same symptoms (bad brain fog, weakness, some digestive issues, etc).

Is it possible that gluten free really was helping? I just dont understand how I felt great while eating gluten for almost 6 weeks.

I am so lost as to what to do. I can't think of much else that changed in the last 6 weeks (I did stop taking a high-dose of vitamin D for a deficiency...per doctor's orders.)

I would appreciate any input on this issue. thanks!

That sounds sort of dangerous! But at the same time I can sort of relate. When I went on my gluten challenge for three months I, too, felt better eating gluten than not. I have more diarrhea now (when I do not have enough fibre) than then (never). I have been off gluten now out of necessity (positive biopsies) for nearly five months. Not feeling any better at all but then again did not get sick when on gluten anyway. I am hoping that some other things I did not associate with celiac will disappear such as insomnia and brain fog that I had chalked up to fibromyalgia.

If you do have celiac it is not doing your body any good returning to gluten. Even if you do feel temporarily better just imagine what is going on inside! This could potentially create more problems in your future. That is downright frightening!

My chronic pain management specialist put me on Zinc, B12 sublingual, B complex, megadose of Magnesium Glycinate in addition to 5,000 mg Vitamin D3 capsules as I have fibromyalgia and lots of back pain in addition to celiac disease.

Keep in mind that there is a fairly incidence of false negatives in both bloodwork and biopsies. If being gluten-free was helping that is your answer. Keep in mind it can take up to 2-3 years for some people to heal.

Please do not give up hope! :)

zebaldwin Explorer
zebaldwin
Posted
  • Author

Well the problem is that I felt better going OFF the diet...which is why I am so confused.

I guess my bottom line question is could it take 6 weeks OFF the diet for the gluten to start affecting me again?

You said that this sounds "dangerous" a few times...what exactly do you mean by that?

love2travel Mentor
love2travel
Posted

Well the problem is that I felt better going OFF the diet...which is why I am so confused.

I guess my bottom line question is could it take 6 weeks OFF the diet for the gluten to start affecting me again?

You said that this sounds "dangerous" a few times...what exactly do you mean by that?

Sorry to be confusing! I felt it was dangerous to go off the gluten-free diet just because of what can go on inside a gluten intolerant or celiac person. I have recently read on here somewhere that a person went back on gluten for a time but had to be taking to the ER because of severe pain or illness resulting from the gluten. But then I put myself at risk for further damage by going back on gluten prior to my biopsies. Sigh...

The part I could relate to is I also felt better eating gluten for three months and you felt better after consuming it for six weeks then feeling worse again. It may have taken that long to feel the effects of eaten gluten - it varies drastically from person to person. Sorry to be of no help. I am just concerned with your going back on a test trial for gluten but feel better that you are off it again.

Have you had further indications of celiac or gluten intolerance? Have you had anything done other than bloodwork which was negative?

zebaldwin Explorer
zebaldwin
Posted
  • Author

Thanks love2travel.

I have only had bloodwork done. If I wanted to get a biopsy or something, is 6 weeks eating gluten enough or no?

Just don't know what to do next :/

GlutenFreeManna Rising Star
GlutenFreeManna
Posted

I haven't posted on here in a while.

I have had a lot of health issues over the past year or so, and decided to try gluten free on my own (negative blood work)

I was gluten free for over 3 months with no (noticeable) difference, so I went off the diet. I have been off for about a month-6weeks, and most of that felt a little better, noticeably better...but only noticeable now because for a week I have had all my exact same symptoms (bad brain fog, weakness, some digestive issues, etc).

Is it possible that gluten free really was helping? I just dont understand how I felt great while eating gluten for almost 6 weeks.

I am so lost as to what to do. I can't think of much else that changed in the last 6 weeks (I did stop taking a high-dose of vitamin D for a deficiency...per doctor's orders.)

I would appreciate any input on this issue. thanks!

Hi, I remember your posts from when you were trying to figure out if you had a gluten intolerance or not. With your symptoms including brain fog and fatigue I would think stopping the Vitamin D is a huge contributing factor. It is possible that it took 6 weeks before your body stopped absorbign vitamins again and you started to feel bad from the low vitamin D when you stopped the supplement. Have you had your vitamin D and other vitamin levels (Iron, potassium, B12, etc) checked recently? It is possible that you are just in the begining stages of developing celiac and the tests didn't pick anything up yet. It's also possible that you are in the 30% that test false negative. In order to redo the tests you should be on a full gluten diet (the equivilant of 3 slices of bread a day) for 3 months. Even then the results could be negative. With your digestive issues however you may be able to push to get a biopsy despite negative bloodwork.

zebaldwin Explorer
zebaldwin
Posted
  • Author

Hi, I remember your posts from when you were trying to figure out if you had a gluten intolerance or not. With your symptoms including brain fog and fatigue I would think stopping the Vitamin D is a huge contributing factor. It is possible that it took 6 weeks before your body stopped absorbign vitamins again and you started to feel bad from the low vitamin D when you stopped the supplement. Have you had your vitamin D and other vitamin levels (Iron, potassium, B12, etc) checked recently? It is possible that you are just in the begining stages of developing celiac and the tests didn't pick anything up yet. It's also possible that you are in the 30% that test false negative. In order to redo the tests you should be on a full gluten diet (the equivilant of 3 slices of bread a day) for 3 months. Even then the results could be negative. With your digestive issues however you may be able to push to get a biopsy despite negative bloodwork.

Thanks for the reply!

Ya, the only things that really changed were the vitamin D and the diet...got a new script for the D, and trying to stick to a better diet. For the biopsy, do I still need to be on gluten for 3 months? (ive gotten the bloodwork done twice by 2 different doctors while eating gluten, both negative)

Thanks again!

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

Celiac.com Sponsor (A8-M):


GlutenFreeManna Rising Star
GlutenFreeManna
Posted

Thanks for the reply!

Ya, the only things that really changed were the vitamin D and the diet...got a new script for the D, and trying to stick to a better diet. For the biopsy, do I still need to be on gluten for 3 months? (ive gotten the bloodwork done twice by 2 different doctors while eating gluten, both negative)

Thanks again!

Yes you would need to be on gluten for 3 months prior to biopsy since you went off of it for so long. Did you get a copy of the blood tests they did? Sorry if you already answered that in another thread. I don't recall. You should make sure they did the complete blood panel and not just 1 or 2 tests. Also make sure the results were interpreted correctly.

nora-n Rookie
nora-n
Posted

I was off gluten for seven months and then one morning I woke up and was not so terribly fatigued anymore.

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 Sarah Grace's topic in Related Issues & Disorders
      21

      Headaches / Migraines and Hypoglycaemia

      @Sarah Grace, Thank you for the update! It's so good to hear from you! I'm glad Thiamine, B Complex and magnesium have helped you. Yes, it's important to take all three together. I had to quit eating cheese and nuts a long time ago because they triggered migraines in me, too. They are high in tyrosine, an amino acid, found also in fermented...
    2. Jmartes71
      - Jmartes71 posted a topic in Coping with Celiac Disease
      0

      Related issues

      Its been a complete nightmare dealing with all these health issues one thing after another and being told many different things.I am looking for a new primary care physician considering when I told my past doctor of 25 years I was diagnosed before any foods eliminated from my diet and now this year at age 54 no longer able to push considering Im always exhausted...
    3. trents
      - trents replied to Sarah Grace's topic in Related Issues & Disorders
      21

      Headaches / Migraines and Hypoglycaemia

      My migraines generally have their onset during the early morning hours as well. Presently, I am under siege with them, having headaches all but two days so far this month. I have looked at all the things reported to be common triggers (foods, sleep patterns, weather patterns, stress, etc.). Every time I think I start to see a pattern it proves not to pan...
    4. Scott Adams
      - Scott Adams replied to jessicafreya's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Tamale ingredients

      These are labeled gluten-free: https://www.amazon.com/Corn-Husks-Tamales-Authentic-Flavorful/dp/B01MDSHUTM/
    5. Wheatwacked
      - Wheatwacked replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      GI DX celiac despite neg serology and no biopsy

      Just a gluten free diet is not enough. Now you have to identify and replenish your malnutrition. Celiac disease is co-morbid with malabsorption syndrome. Low vitamin D, Low Thiamine caused Gastointeston Beriberi, low choline, low iodine are common the general population, and in newly diagnosed Celiacs in the western culture its is more likely. It takes...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,145
    • Most Online (within 30 mins)
      7,748
    Kundrey
    Newest Member
    Kundrey
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • knitty kitty
      Headaches / Migraines and Hypoglycaemia

      By knitty kitty · Posted

      @Sarah Grace,  Thank you for the update!  It's so good to hear from you!  I'm glad Thiamine, B Complex and magnesium have helped you.  Yes, it's important to take all three together.    I had to quit eating cheese and nuts a long time ago because they triggered migraines in me, too.  They are high in tyrosine, an amino acid, found also in fermented foods like sauerkraut and red wine.   I found taking Tryptophan very helpful with migraines.  Tryptophan is a precursor of serotonin and people with migraines are often low in serotonin.  (Don't take tryptophan if you're taking an SSRI.)     This recent study shows tryptophan really helps. The association between dietary tryptophan intake and migraine https://pubmed.ncbi.nlm.nih.gov/31254181/   For immediate respite from a migraine, try smiling REALLY BIG, mouth closed, tongue pressed against roof of mouth, and crinkle up your eyes like you just heard or saw the funniest thing...  This causes an endorphin release in the brain.  Usually it's the funny event, then the endorphin release and then the smile.  Smiling first makes the endorphin center think it missed something and it catches up quickly by releasing endorphins after the big crinkle eyed smile.  Must make crinkly eyes with smile or it won't work.  If you do this too frequently within a short time frame (several hours), you can deplete your endorphins, but you'll make more in a couple of hours, so no worries. Get your thyroid checked, too.  Migraines are also seen in low thyroid function (Hashimoto's or hypothyroidism).  Celiac and thyroid problems go hand in hand.   Vitamin D helps, too.  Low Vitamin D is found in migraine.   I'm so glad you're doing better.  
    • Jmartes71
      Related issues

      By Jmartes71 · Posted

      Its been a complete nightmare dealing with all these health issues one thing after another and being told many different things.I am looking for a new primary care physician considering when I told my past doctor of 25 years I was diagnosed before any foods eliminated from my diet and now this year at age 54 no longer able to push considering Im always exhausted, leg pain , stomach,skin and eye issues,high blood pressure to name a few all worsen because I was a  school bus driver and few years until my immune system went to hell and was fired because of it.Im still struggling now, Im sibo positive and been told im not celiac and that I am.I have a hernia and dealing with menopause. Its exhausting and is causing depression because of non medical help. Today I saw another gastrointestinalist and he said everything im feeling doesn't add up to celiac disease since my ITg levels are normal so celiac disease is under control and it's something else. I for got I had Barrett's esophagus diagnosed in 2007 because recent doctors down played it just like my celiac disease. Im currently looking for a pcp in my area because it is affecting me personally and professionally. Im told since celiac looks under control it's IBS and I need to see a therapist to control it. Gastrointestinalist around here think only food consumption and if ITG looks normal its bit celiac disease it's something else. Is this right? This is what im being told. I want medical help but told its IBS.Im feel lost by " medical team "
    • trents
      Headaches / Migraines and Hypoglycaemia

      By trents · Posted

      My migraines generally have their onset during the early morning hours as well. Presently, I am under siege with them, having headaches all but two days so far this month. I have looked at all the things reported to be common triggers (foods, sleep patterns, weather patterns, stress, etc.). Every time I think I start to see a pattern it proves not to pan out in the long run. I'm not sure it's any one thing but may, instead, be a combination of things that coalesce at certain times. It's very frustrating. The medication (sumatriptan or "Imatrix") is effective and is the only thing that will quell the pain. NSAIDs, Tylenol, even hydrocodone doesn't touch it. But they only give you 9 does of sumatriptan a month. And it doesn't help that medical science doesn't really know what causes migraines. They know some things about it but the root cause is still a mystery.
    • Scott Adams
      Tamale ingredients

      By Scott Adams · Posted

      These are labeled gluten-free: https://www.amazon.com/Corn-Husks-Tamales-Authentic-Flavorful/dp/B01MDSHUTM/
    • Wheatwacked
      GI DX celiac despite neg serology and no biopsy

      By Wheatwacked · Posted

      Just a gluten free diet is not enough.  Now you have to identify and replenish your malnutrition.  Celiac disease is co-morbid with malabsorption syndrome.  Low vitamin D, Low Thiamine caused Gastointeston Beriberi, low choline, low iodine are common the general population, and in newly diagnosed Celiacs in the western culture its is more likely.  It takes time to heal and you need to focus on vitamins and minerals.  Gluten free foods are not fortified like regular processed foods.  
×
×
  • 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.