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Are These Signs Of Celiac?

ImWithStupid

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ImWithStupid Newbie
ImWithStupid
Posted

For starters, I am a 19 year old male who has had odd symptoms going on 7 years now. These symptoms include-

-hyperhidrosis

-fatigue

-tachycardia

-low blood pressure

-exercise intolerance

-generalized muscle twitching

-cold hands and feet that change colors

-lactose intolerance

-general GI issues

-bloating

-gas

-constipation

-thrush and halitosis

Sorry for the long list, just wanted to be thorough. I have been to GI, Cardiologist, Dermatologist, Neurological, and my personal doctor. About a 6 months ago I was diagnosed with POTS, basically my heart starts racing and my BP drops when I change positions. I am on medicines for that now but I still just have a general feeling of illness and fatigue. The tests that I have had done include-

-MRI of brain (negative)

-CAT scan of the abdomen(negative with slight intestinal swelling)

-EKG(negative)

-Echo cardiogram of the heart and aorta(negative)

-Stress test(negative)

-Tilt table test for POTS (Positive)

-Numerous blood panels(all normal)

I finally convinced my doctor into doing the blood test for celiac disease, it came back slightly elevated, but he said it was nothing to worry about. So being as stubborn as I am I go on a strict gluten free diet. Within a week the muscle twitches went away, stool was easier to pass, tongue returned to a normal color(used to be white no matter what I did), and the fatigue started to clear up. After about a month and a half the fatigue started to set in again so I tried eating gluten again, I figured that it might not be celiac. After a week of progressively getting worse while eating gluten again I went back to gluten free. During that week my tongue got caked white and I had really bad breath.

Now looking up thrush from eating gluten didn't give me what I expected. Instead it said that it could be something called a candida overgrowth. Is this worth going to the doctor about or is the feeling better on cutting out gluten enough to rule it celiac.

thanks for bearing with me here, I will add more if needed.

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eatmeat4good Enthusiast
eatmeat4good
Posted

Hi and welcome!

All of your list of symptoms are consistent with Celiac/Gluten Intolerance. Many people have written about the coated tongue being gluten related and it is not necessarily Candida/yeast. I had that symptom for years and they gave me the Nystatin swish and swallow medicine and it never worked. It went away within a month of being gluten free. Heart palpitations but negative EKG is also very common. I had that one too. I do not understand why your Dr. said slightly elevated and nothing to worry about because as I understand it any elevation at all is Celiac. But there is no end to ignorance about this disease when it comes to the medical profession. Question: In your numerous blood tests, did you have your vitamin levels checked? The common ones for Celiac to be deficient in are in part, the fat soluble vitamins A E D K all B vitamins, iron, magnesium, zinc, calcium folate and B 12- so it might be a good idea to get checked if you can. The other thing is to have a thyroid test. Thyroid problems are very common in people with Celiac/Gluten Intolerance.

So happy for you that you are already seeing the results of being gluten free. And thank god you kept searching for answers. Scary how many things they just dismiss but you listened to your body. Glad you are here and yes it sounds like you are one of us. There are a lot of smart people here who can answer any questions you may have.

Oh my I just noticed you are only 19. Well, being stubborn probably just saved you about 10 to 20 years of being sick and miserable Mr. ImWithStupid! I wouldn't doubt if most if not all of your symptoms clear up on staying gluten free. You mentioned Dermatologists...do you have rashes that don't heal? If so, you may have DH Dermatitis Herpetiformis, the skin form of Celiac. Read all you can and ask questions. There are going to be issues with cross contamination that you will have to pay close attention to. People tend to get more sensitive as time goes by.

Anyway, welcome, and I love it when people figure this out on their own. I can't believe all the Dr.'s and tests you have had. Sometimes I think I should have gone to the Dr. more when I was sick all those years, but when I read stories like yours I realize that it wouldn't have much mattered. They just STILL don't know anything about diagnosing this disease. If you post your Celiac test results, the people here who know how to read tests will help interpret them. The slightly elevated is concerning because a positive is a postiive but it sounds like you've got your answer.

Now you get to watch yourself get healthy and age backwards as they say here. ;)

ravenwoodglass Mentor
ravenwoodglass
Posted

welcome to the board, if you had a postive blood test your in the right place. Many doctors want blood tests to be strongly positive not realizing that even a low positive with celiac is positive. Good for you for figuring this out. Do mention to your doctor the relief you got from the diet and the return of problems when you added it back in. That combined with your positive blood work is pretty diagnostic.

Stay gluten free and be strict about it. Your in a good place to learn all you need to do to keep yourself safe. Ask any questions you need to.

hnybny91 Rookie
hnybny91
Posted

What is with this "slightly positive"??? I have heard that from other people and it is absurd. That is like saying you are "slightly pregnant"! There is no such thing with this disease. You need to go gluten free now and stay gluten free. Many of us learned that the medical community was no help in diagnosing us. I had a list just like yours but longer and no doctor caught it - even though I had documented vitimin deficiency and stomach pain as two of my symptoms. You will find so much information on this site. Congratulations for taking matters into your own hands :)

ImWithStupid Newbie
ImWithStupid
Posted
  • Author

Thanks for all of the feedback everyone =). Now to answer some of your questions. The reason they dismissed the slight positive is because they were really driving for it to be something else. I had really bad symptoms of brain fog, headaches, sensitivity to light, dizziness, all that good stuff. They weren't looking at the symptoms as a whole, but rather one at a time, whichever seemed the worst. My GI symptoms got shoved to the back burner instead of them adding it together. After years of testing and each doctor pursuing their own thing I started researching for myself. I noticed my symptoms were very closely related to vitamin deficiency or malabsorption. Then I looked into what could cause that and Celic/gluten intolerance came up. Having had no success anywhere else I thought I would give it a shot.

Also, other tests I had done which I had forgot about (hard to remember all of them with all the blood they have drawn lol)-

-blood test for diabetes x3 (negative)

-blood test for thyroid x4 (negative)

-blood test for anemia x3 (negative)

-something they called a general blood panel x1 (normal)

I was tested for diabetes so much because I feel very sick if I miss breakfast or don't eat for 6-8 hours (dizziness, weak, shaking, racing heart).

Any other questions are welcome and if I missed something don't be afraid to tell me,

Thank you everyone :)

txplowgirl Enthusiast
txplowgirl
Posted

I was tested for diabetes so much because I feel very sick if I miss breakfast or don't eat for 6-8 hours (dizziness, weak, shaking, racing heart).

Any other questions are welcome and if I missed something don't be afraid to tell me,

Thank you everyone :)

[/quote\]

Welcome to the forums!

Yep, sounds like a positive to me as well. Like being a little bit pregnant. :P

That sounds like hypoglycemia to me which is the opposite of diabetes and if left untreated can act just like it including passing out and going into a coma. Not good. Also can be another symptom of Celiac. A LOT of us here have it as well.

Go back on the diet and you will definetly start feeling a lot better.

  • 3 weeks later...
ImWithStupid Newbie
ImWithStupid
Posted
  • Author

Hi everyone, thought I'd post an update. I've been back on the gluten free diet for 3 weeks now and I'm feeling quite a bit better. I was doing some more reading on celiac and it mentioned that cholesterol levels can be low in those with undiagnosed celiac. This makes quite a bit of sense now because I was a little concerned that my total cholesterol was only 62 total when I had my blood tests done last. I'm assuming this is just another sign of celiac that reinforces the self diagnosis. If this is the case, should it go to a normal level with staying gluten free? If so, how long after being gluten free should I wait to go get my levels tested again?

Thanks again for all the help and support everyone, it's really helped me stick to the road to getting better, even if that road isn't full of assorted bread goods:(. I'll get over it lol.

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      @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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    • 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
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      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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      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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