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

What Is Wrong With Me?

mikehall117

Recommended Posts

mikehall117 Rookie
mikehall117
Posted

Hi. I am new here and would like to share my concerns about my health with you in the hope that someone might be able to give me some advice. I am almost certain I have some form of problem related to gluten and have had for a very long time. I had the blood tests a couple of years ago but they came back negative. I have been trying to identify if I am merely intolerant or have celiac disease and would like to know what people make of my symptoms. I am going to be quite thorough so I apologise for the huge amount of text!

I am male and 33 years old. I first realised that there may be a problem when I did the Atkins diet a few years ago (2003). For years I had been plagued with a wide range of health problem which all cleared up when I started dieting! Weight gain was one issue however the real problem ones have been:

Migraine

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

Celiac.com Sponsor (A8-M):


gfb1 Rookie
gfb1
Posted

this brings up an interesting point... if you are drinking beer, you are NOT gluten-free!!

budweiser makes a beer called Redbridge -- made entirely from sorghum.

Open Original Shared Link

it's not bad (much better than rice beers, imho) and my brother-in-law's are eternally grateful to anheuser/busch...

elonwy Enthusiast
elonwy
Posted

Except for the mouth Ulcers, you're pretty much word for word my symptoms before gluten free. If you get a *good* GI, then they should listen to the results of diet challenge, not just dismiss diagnosis with the results of one blood test.

That being said, I don't know that two weeks is long enough for a true challenge. I felt better almost immediately after going gluten free, but it took longer than two weeks to ferret out the hidden gluten and get to 100% gluten free, at which point the weirder side effects like migraines and insomnia started to get better. Not what you want to hear, I know. But to me it definitely sounds like you've got issues with gluten, Celiac or no. It may seem like a huge PITA to give up all things gluten-y, but feeling good more than makes up for it, IMHO.

mikehall117 Rookie
mikehall117
Posted
  • Author

Hi. Thanks for the replies. So how long do you think I should go gluten-free before I can start to see the long-term benefits such as reduced fatigue, migraines etc? I was planning on two weeks but if it takes 6 months I'll gladly do it as I really want to put and end to this. It has made me miserable for too long.

After I have abstained from gluten would I need to introduce gluten rich foods for a while and record the effects? I am keeping a diet diary and recording all my symptoms on a scale of 1-10 each day to try and monitor how things improve. I want to make sure I have indisputable evidence that I am gluten intolerant before I go back to my doctor as I need to be able to challenge the negative blood test result.

Rebecca's mom Rookie
Rebecca's mom
Posted

If you don't want to do a gluten challenge, then you may be able to ask your doctor to run a genetic test. I don't know what this test is "called" at other labs, but Quest Diagnostics calls it "HLA Typing for Celiac Disease". Since this tests to see if you carry the GENETIC marker for Celiac Disease, you don't have to have gluten in your system.

Given everything that you have described, I would be VERY surprised if you DON'T test positive for celiac disease! Incidentally, some people test negative on the antibody test, yet still have an "active" case of celiac disease. I happened to have Dermatitis Herpetiformis, but because it didn't constantly itch, my dermatologist didn't think I had it. I just found out last week that I carry one of the genes for celiac disease - I've been on a gluten-free diet since last April, though, because our daughter was diagnosed with it.

The best part has been losing 38 pounds without even trying (well, that and feeling SO much better!).......

Teresa Koch

CeliBelli Newbie
CeliBelli
Posted

I agree, I will be stunned if you are not diagnosed with celiac disease. My story is also very similar to yours. The bad news is you will need to keep eating gluten until you can get tested again. I highly recommend you do this, as you will want an official medical diagnosis in hand if you can get one. You may need this dealing with doctors and hospitals in the future, as they will not give credibility to someone who self-diagnoses.

There are new anti-body tests on the market now, as well as the new genetics tests, which have higher levels of reliability and accuracy than what you likely had a few years ago. I had the full battery of tests, and tested negative on the older style tests, but quite positive on the newer tests and the genetics. You will also want to have the endoscopy done by a good gastroenterologist with experience treating celiac patients.

You need to keep eating (and drinking) gluten until all of these tests are complete so they test you in a full blown reaction, since your antibody level will begin to drop rapidly once you go completely off gluten. Don't put any of this off. The sooner you get fully tested, the sooner you can begin to get well.

Good luck!

mikehall117 Rookie
mikehall117
Posted
  • Author

It's so reassuring to read your responses! This is the first time anyone has considered all of my symptoms and it's nice to know I am not alone. I have booked myself in to see a doctor next week. I have decided that am going to stick to a gluten free diet for a week or two more and keep track of my symptoms. Hopefully I will see everything clear up. Even after just 48 hours I am feeling so much better and have a huge energy boost today! Once I have spoken to the doc I may need to switch to a gluten diet again. The UK Coeliac Charity recommended that I eat a minimum of 4 slices of bread per day for 6 weeks prior to any blood tests so if the doctor agrees this is what I will do.

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

Celiac.com Sponsor (A8-M):


prayin4achange Newbie
prayin4achange
Posted

Wow I also have a lot of the same symtoms, but no doctor will listen to me either about celiac. I think I will just beg someone to help me order the genetic test and see how that goes. I really hope u figure this all out. Please update us on everything. We are all behind u and want to support you through this time. Ive realized only people who have been through similar problems really understand.

May God bless you!

jenn

mikehall117 Rookie
mikehall117
Posted
  • Author

Hi Jenn. Thanks for the positive message.

I found that by writing everything down and analysing all of my symptoms I have been able to get a great deal of evidence together to present to my doctor. It's the first time I have done an exercise like this and now I can see it in black and white it all seems so very obvious. I don't know how it will be received, however I know that there is no way I can realistically articulate everything on my list in the 10 minutes I will have in the surgery. Therefore I am mailing everything I have written to my doctor today so that hopefully they will have read through it in advance and will have a clear picture of my situation. I am also seeing a doctor I have never seen before in the hope that they will offer a fresh perspective.

I know what you mean about others not understanding. I have tried to talk to my wife about this and she hasn't been very receptive of the idea. I don't think she really understands just what I have been through and how all of my symptoms are unquestionably linked to my diet. It must be quite difficult for someone to understand without fully comprehending the biology behind it. It's also difficult to link concepts such as tiredness and depression with things such as a skin rash and headaches when they appear to be so different from each other.

My appointment is next Tuesday so I will let you know what happens.

Best wishes, Mike.

mikehall117 Rookie
mikehall117
Posted
  • Author

I just thought I

OptimisticMom42 Apprentice
OptimisticMom42
Posted

Hello,

I just wanted to note that I have seen several posts on the net by people like you and I who went on the atkins diet and then were unable to go back to eating their old favorites. Have you seen an allergist? You may have intolerances beyond gluten. For many dairy, soy and nearly all grains are not tolerated well.

Best wishes,

OptimisticMom42

TES Newbie
TES
Posted
Hi. I am new here and would like to share my concerns about my health with you in the hope that someone might be able to give me some advice. I am almost certain I have some form of problem related to gluten and have had for a very long time. I had the blood tests a couple of years ago but they came back negative. I have been trying to identify if I am merely intolerant or have celiac disease and would like to know what people make of my symptoms. I am going to be quite thorough so I apologise for the huge amount of text!

I am male and 33 years old. I first realised that there may be a problem when I did the Atkins diet a few years ago (2003). For years I had been plagued with a wide range of health problem which all cleared up when I started dieting! Weight gain was one issue however the real problem ones have been:

Migraine

mikehall117 Rookie
mikehall117
Posted
  • Author

Hi OptimisticMum42. Thanks for the advice. A few weeks ago I undertook the Atkins diet again; however I continued to have dairy products. I certainly didn't notice any ill effects. I am still consuming dairy and other produce at present and I have reintroduced all other food groups and am now only eliminating Gluten. With the exception of a couple of mistakes 10 days ago (which made me quite ill) I have been Gluten free for almost 7 weeks now and I am feeling very well indeed. I will continue to monitor myself for any ill effects and hopefully my diet diary will help me identify where I may have problems. I am getting medical advice next week so I should be able to get a plan of action to help me identify what has been giving me all these problems.

OptimisticMom42 Apprentice
OptimisticMom42
Posted

Hello again,

Glad to hear that you are feeling better. Sounds like you are using a combination of the atkins diet and the elimination diet to figure it all out. That was the advice my dr. gave me even after the allergy test so you've probably saved yourself some time and money. However, I would still try to find a Dr. who is willing to look at your notes and offer testing and diagnosis. It's good that you know what's best for you (here I have to deviate from optimism and suggest caution) but if ever you were unable to speak for yourself your medical records need to speak for you. Having worked in a state run facility I know how important this is.

Best wishes,

OptimisticMom42

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. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      20

      My only proof

      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac...
    2. knitty kitty
      - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      44

      Supplements for those Diagnosed with Celiac Disease

      @Scatterbrain, Thiamine Vitamin B1 and amino acid Taurine work together. Our bodies can make Taurine from meats consumed. Our bodies cannot make Thiamine and must consume thiamine from food. Meat is the best source of B vitamins like Thiamine. Vegetarians may not make sufficient taurine since they don't eat meat sources of taurine...
    3. knitty kitty
      - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      20

      My only proof

      @Jmartes71, I went to Doterra's site and had a look around. The Doterra TerraZyme supplement really jumped out at me. Since we, as Celiacs, often have digestive problems, I looked at the ingredients. The majority of the enzymes in this supplement are made using black mold, Aspergillus! Other enzymes are made by yeast Saccharomyces! Considering...
    4. Scott Adams
      - Scott Adams commented on Scott Adams's article in Additional Concerns
      2

      Gluten Transfer from Biodegradable Tableware: What a New Study Found and Why It Matters (+Video)

      Thanks for mentioning this, and here is an older article on the topic:
    5. Scott Adams
      - Scott Adams commented on Scott Adams's article in Gluten-Free Grains and Flours
      18

      Cricket Flour Makes Really Good Gluten-Free Bread

      Your concern about certified gluten-free cricket powder is completely valid, as cross-contamination in both feedstock and processing is a real issue. Currently, the availability of certified gluten-free options is limited, but brands like Chapul and Entomo Farms, which I believe have offered products processed in dedicated facilities and labeled gluten-free...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,541
    • Most Online (within 30 mins)
      7,748
    Sally Garber
    Newest Member
    Sally Garber
    Joined
  • Celiac.com Sponsor (A20):

  • Celiac.com Sponsor (A22):



  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac? Your not eating gluten so its something else.Medical caused me depression. I thought I was safe with my former pcp for 25 years considering i thought everything I went through and going through will be available when I get fired again for health. Health not write-ups my health always come back when you're better.Im not and being tossed away at no fault to my own other than shitty genes.I was denied disability because person said he didn't know how to classify me! I said Im celiac, i have ibs, hernia, sciatica, high blood pressure, in constant pain have skin and eye issues and menopause intensified everything. With that my celiac nightmare began to reprove my disregarded disease to a bunch of clowns who think they are my careteam when they said I didn't have...I feel Im still breathing so I can fight this so no body else has to deal with this nightmare. Starting over with " new care team" and waisting more time on why I think I am when diagnosed in 1994 before food eliminated from my diet. P.s everything i went through I did write to medical board, so pretty sure I will continue to have a hard time.
    • knitty kitty
      Supplements for those Diagnosed with Celiac Disease

      By knitty kitty · Posted

      @Scatterbrain, Thiamine Vitamin B1 and amino acid Taurine work together.  Our bodies can make Taurine from meats consumed.  Our bodies cannot make Thiamine and must consume thiamine from food.  Meat is the best source of B vitamins like Thiamine.   Vegetarians may not make sufficient taurine since they don't eat meat sources of taurine.  Seaweed is the best vegetarian source of taurine. Vegetarians may not consume sufficient Thiamine since few veggies are good sources.  Whole grains, legumes, and nuts and seeds contain thiamine.  Many of these sources can be hard to digest and absorb for people with Celiac disease.   You may find taking the forms of thiamine called Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) and a B Complex will give the benefits you're looking for better than taurine alone.  
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @Jmartes71, I went to Doterra's site and had a look around.  The Doterra TerraZyme supplement really jumped out at me.  Since we, as Celiacs, often have digestive problems, I looked at the ingredients.  The majority of the enzymes in this supplement are made using black mold, Aspergillus!  Other enzymes are made by yeast Saccharomyces!  Considering the fact that Celiac often have permeable intestines (leaky gut syndrome), I would be very hesitant to take a product like this.  Although there may not be live black mold or yeast in the product, the enzymes may still cause an immune system response which would definitely cause inflammation throughout the body.   Skin, eyes, and intestines are all made from the same basic type of cells.  Your skin on the outside and eyes can reflect how irritated the intestines are on the inside.  Our skin, eyes, and intestines all need the same vitamins and nutrients to be healthy:  Vitamin A, Niacin B3 and Tryptophan, Riboflavin B2, Biotin B7, Vitamin C, and Omega Threes.  Remember that the eight B vitamins work together.  Just taking high doses of just one, vitamin like B12, can cause a deficiency in the others.  Taking high doses of B12 can mask a Folate B9 deficiency.  If you take B12, please take a B Complex, too.  Thiamine B1 can be taken in high doses safely without toxicity.  Thiamine is needed by itself to produce energy so every cell in the body can function, but Thiamine also works with the other B vitamins to make life sustaining enzymes and digestive enzymes.  Deficiencies in either Niacin, Vitamin C, or Thiamine can cause digestive problems resulting in Pellagra, Scurvy, and Gastrointestinal Beriberi.   If you change your diet, you will change your intestinal microbiome.  Following the Autoimmune Protocol Diet, a Paleo diet, will starve out SIBO bacteria.  Thiamine keeps bacteria in check so they don't get out of control as in SIBO.  Thiamine also keeps MOLDS and Yeasts from overgrowth.   Menopause symptoms and menstrual irregularities are symptomatic of low Vitamin D.   Doctors are not as knowledgeable about malnutrition as we need them to be.  A nutritionist or dietician would be more helpful.   Take control of your diet and nutrition.  Quit looking for a pill that's going to make you feel better overnight.  The Celiac journey is a marathon, not a sprint.   "Let food be your medicine, and let medicine be your food."
    • RUKen
      Are Lindt chocolate balls gluten free?

      By RUKen · Posted

      The Lindt (Lindor) dairy-free oat milk truffles are definitely gluten-free, and (last time I checked) so are the white chocolate truffles and the mint chocolate truffles. 
    • lmemsm
      Supplements for those Diagnosed with Celiac Disease

      By lmemsm · Posted

      I've used magnesium taurinate and magnesium taurate vitamins.  Didn't notice much of a difference when I used them.
×
×
  • 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.