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Did You Experience These Symptoms Before Diagnosis?

Mox25

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Mox25 Newbie
Mox25
Posted

Hi everyone,

I have read through the forum and think it's wonderful how helpful everyone is. I have a couple of questions for those of you who have been diagnosed. I want to know if my symptoms are consistent with Celiacs. Clearly, I am here bc I am having GI symptoms and match Celiacs, but with the broad range of symptoms that could be anyone. I am currently waiting on blood test results. I have a couple of symptoms that I am not sure match what others had before diagnosis and would love to know if any Celiacs experienced the following:

1) Sudden onset. I would not describe myself as someone who has had a "sensitive" stomach in the past. My symptoms just appeared and won't go away but it is not something I have struggled with my whole life. (I should add I am 26).

2)Mucus and blood in stool (ew). The thing is, the stool is normally formed but covered with mucus and a very SMALL amount of blood. This is true for every bm for > 1 month

3 )In ability to lose weight which has NEVER been a problem until the last six months (maybe I am just getting older)

4)I can't correlate my bloating, C, or general GI symptoms with any particular food. Maybe this because I eat a very healthy balanced diet so I am consuming dairy, grains, vegs, and fruit daily. But if I have Celiacs should I be able to somehow time my issues with the intake of gluten (ie 1 hour after I eat it I feel sick?)

Again, I am just wondering if anyone diagnosed with Celiac's had these symptoms before diagnosis.

Thanks so much!!! Any advice is greatly appreciated and I think it's wonderful to have a forum to help people deal with these struggles...

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xxkristin Apprentice
xxkristin
Posted

My symptoms popped up out of nowhere. One day, I just started get really bloated whenever I ate something. And like with you, for me, it doesn't seem to be only gluten that causes the bloating - it sometimes happens when I eat food that I know doesn't have gluten in it, or would assume doesn't, as it's labeled gluten free. I don't know if this is normal, and whether this is just because I have gluten in my system which is making me bloat pretty much everytime I eat. I'm a little confused about this. Also, I actually gained weight in the past few months, which I'm also confused about because apparently you lose weight when you're celiac, as your body isn't absorbing nutrients, so I'm a little confused about how I could have gained weight.

Hopefully that helps a bit.

mushroom Proficient
mushroom
Posted

Sudden onset: Most people who are predisposed to develop celiac have a triggering event - physical or emotional stress, injury, illness, childbirth a long list here.

Mucous and blood in stool: Mucous very common, blood less common but not rare.

Inability to lose weight: Common. So-called classic is weight loss, but weight gain and inability to lose is just as common (body feels starved of nutrients and stores anything it can find)

Inability to correlate bloating with foods: Time from consumption to symptoms varies with each individual and often each individual food; varies from as little as 30 minutes to as much as 3-4 days.

Perhaps you are beginning to realize how come celiac/gluten intolerance is so hard to diagnose :rolleyes:

Mox25 Newbie
Mox25
Posted
  • Author

My symptoms popped up out of nowhere. One day, I just started get really bloated whenever I ate something. And like with you, for me, it doesn't seem to be only gluten that causes the bloating - it sometimes happens when I eat food that I know doesn't have gluten in it, or would assume doesn't, as it's labeled gluten free. I don't know if this is normal, and whether this is just because I have gluten in my system which is making me bloat pretty much everytime I eat. I'm a little confused about this. Also, I actually gained weight in the past few months, which I'm also confused about because apparently you lose weight when you're celiac, as your body isn't absorbing nutrients, so I'm a little confused about how I could have gained weight.

Hopefully that helps a bit.

Thanks for your response xxkristin. Sounds like we are in the same boat. Are diagnosed or in the process?

Mox25 Newbie
Mox25
Posted
  • Author

Thanks for your responses. You are right. This is very difficult disease to fully understand. To clarify about one of my questions, I am trying to figure out if a symptom is mucus IN the stool vs mucus ON the stool. I'm not even sure if there is a difference. But all the info I have read says mucus in stool is a symptom. However, I would assume this means some sort of loose type stool. My symptom is a normally formed stool coated with mucus. Sorry for TMI but I even discussed this with Docs and they dont seem to know what I am talking about. Does anyone have a comment on this topic?

mushroom Proficient
mushroom
Posted

Stools coated with mucous was my experience. At least they slid out easily :lol: (Sorry, TMI)

eatmeat4good Enthusiast
eatmeat4good
Posted

And the small amount of blood was one of my son's symptoms...this was happening long before he developed the diarrhea. Eventually it became diarrhea. I think you are getting your answer before your symptoms get worse. I wish I had figured that out for him. He was concerned about it, but it was just a little amount and the Dr.'s weren't concerned about it either...actually said that can happen to people sometimes. But now I think- not unless they are getting sick from gluten.

To clarify though, my son was not officially diagnosed. However the blood in stools no longer happens, nor does the diarrhea. He is 4 months gluten free.

Just wanted you to know the mucous and the blood are consistent with Celiac/Gluten Intolerance in my opinion.

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    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
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      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
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      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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