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Newbie - Celiac Symptoms?

zsf86

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zsf86 Newbie
zsf86
Posted

Hi all, I’m new here and just looking for some advice.

Since Febuary I have gone from being healthy and happy to constantly feeling unwell , looking unwell and generally feeling really down. (i'm 23, female)

I rrecently moved to a new country and after having abnormalities show up on Liver function tests for my immigration medical, I thought I should tell my Dr about the other problems that I have been having but tried to ignore on the hope that they would right themselves.

My symptoms include:

headaches

bloated stomach

stomach aches/cramps

foul-smelling gas

fatty/pale stools

irregular bowel movements, which go from constipation to diarrhea

occasional bowel incontinence

tiredness

forgetfulness

mood swings

depression

weight gain

not had a period for 6 months, was previously very regular monthly

spots on face especially around chin/mouth

rash on back and chest

rash on scalp which is sore, burning, itchy

excessive hair loss

a bald patch on the back of my head

The Dr tested me for lots of different things including Celiac. The tests came back that I have hypothyrodism and also malabsorption. So I have been put on Levothyroxine and vit b, vit b12, vit d, calcium, iron, folic acid supplements for all of the deficiencies. The celiac and lactose intolerance tests both came back negative. So I was sent away by the Dr and told we’ll get your thyroid levels sorted first and that i have to go back in a month for blood tests to check that the levels are right and he’ll look into my other problems then. I feel like I have been fobbed off.

Anyway, I have been taking all of these pills for over two weeks now and although i’m not feeling as tired as i was all of the other problems are still there. Infact my scalp is so sore and i’m losing that much hair its really getting me down. I feel like my family are fed up of me saying i’m not well so i try to hide it. And I don’t know that many people here so its hard to find people to talk to.

After reading things on the net it seems i have so many celiac symptoms. Could i still be celiac although the blood test was negative? Does anyone know if hypothyroidism, malabsorption and celiacs can be connected? Or am I just going mad? Surely puttling me on all these supplements will increase my levels of these vitamins etc but there must be an underlying reason for the malabsorption which isn’t going to just go away.

Anyway sorry for the long post, its just nice to get it all off my chest. Any info or advice would be great

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ravenwoodglass Mentor
ravenwoodglass
Posted

"After reading things on the net it seems i have so many celiac symptoms. Could i still be celiac although the blood test was negative? Does anyone know if hypothyroidism, malabsorption and celiacs can be connected? Or am I just going mad? Surely puttling me on all these supplements will increase my levels of these vitamins etc but there must be an underlying reason for the malabsorption which isn

autopilot Newbie
autopilot
Posted
Hi all, I
ravenwoodglass Mentor
ravenwoodglass
Posted
Oh my.... I am in shock....Oh my........................ Sorry, I just found this board and site etc. I really just heard of Celiac disease. My doctor just told me he wanted to test me for this. So I looked it up. And I read your list of symptoms and I am in shock... I never thought - in a million years- that ALL of my crazy symptoms - my bizarre array of "problems" - verbatim!! Your list... I have had these ALL - exactly as you describe - for 10 years. (these years have included 6 hospitalizations for heart failure, pulmonary edema etc. - just got out 4 days ago - with a renewed hope when one of my new doctors talked about celiac and gluten etc. The hair, skin, hiding, weakness, loss of a life of any kind, family that wonders, I wondered - went to a shrink, isolating - tired of explaining but no explanation. I am so shocked I want to read more on this site but I have to go and collect my thoughts, myself. Am I dreaming this? Unbelievable.... Thank you..........

Hi and welcome to the board. It is shocking when we realize all the problems that can come from gluten. When I was diagnosed I was just happy the horrible, painful daily and nightly D was gone. When my doctor said alot of my other issues would improve I frankly didn't believe him. While none of us really want to be celiac the diagnosis can make for miraculous seeming changes when we have been on the diet for a bit.

I am glad your doctor is testing and hope he has told you not to go gluten free until your tests are done. Even if you have negative testing do make sure to give the diet a go after all testing, including endoscopy if you choose one, is finished.

zsf86 Newbie
zsf86
Posted
  • Author

Thank you for the replies. Well I'm, back at the Doctors in two weeks for my thyroid etc check so i will see what the Dr says then. I have tried not eating gluten before and i do notice a difference, but i have been holding back on going totally gluten free without knowing that this is actually the cause. I'd just like to know for sure and be able to tell people that I do have something wrong and then be able to change things and get better. My biggest problem is the fact that I am still on a visitors visa and i am having to pay ridiculous amounts just to see the Dr so I would hate to think how much a endoscopy would cost.

Does anyone know if there is a connection between hypothyroidism, malabsorption and celiac?

Thanks again

ravenwoodglass Mentor
ravenwoodglass
Posted
Does anyone know if there is a connection between hypothyroidism, malabsorption and celiac?

Thanks again

Yes there is. If you check out the Related Disorders section of the board you will find numerous posts on this. Also if you do a search lots will come up.

I don't know where you are but if you look into Enterolab they can do stool and gene testing and although they can't diagnose celiac they can tell you if you are making antibodies and if you have malabsorption.

You might want to check out this page from the home page. It has info and a lot of links that may be of value to you.

https://www.celiac.com/articles/1106/1/Celi...toms/Page1.html

Twiggy Rookie
Twiggy
Posted

Hi i am Hyopthyroid,i have been on levothyroxine for 6 years....sadly for me it looks like i have been a silent ceoliac since my teens (am 39 now)the road to recovery is generally slow for thyroid patients.I suffered all mannor of symptoms beore diagnosis of thyroid and i'm sure if my ceoliac was diagnosed all those years ago i wouldnt have sufferd at all.I did suffer hair loss and weight gain absence of periods,severe constipation extreme fatigue and muscle cramps/aches.The connective tissues in some of my joints became detatched and caused hurrendous pain.I cried with relif when i was diagnosed because i was starting to think i was loosing the plot...i wasnt!

There is a definate link with thyroid and ceoliac as they are both auto-immune conditions and if you have one you should be automaticaly tested for the other...good luck.x

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ang1e0251 Contributor
ang1e0251
Posted

I am so glad you are getting treated at least for your thyroid. When I lived in a foreign country, I can't even imagine being so sick. You have been given great advice I just wanted to add that I'm thinking of you and please keep us posted.

zsf86 Newbie
zsf86
Posted
  • Author

Thank you all for your advice. Its so nice to know that other people have the same symptoms as me and that I'm not going crazy (well in my opinion :) ) I'm in NZ, i guess that the testing through entrolab is in the states?

I will see what the Dr says in two weeks, then work out where to go from there.

Thanks again.

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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
      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.
    • rei.b
      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.
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      Food and environmental allergies involve IgE antibodies.  IgE antibodies provoke histamine release from mast cells.   Celiac disease is not always visible to the naked eye during endoscopy.  Much of the damage is microscopic and patchy or out of reach of the scope.  Did they take any biopsies of your small intestine for a pathologist to examine?  Were you given a Marsh score? Why do you say you "don't have intestinal damage to correlate with lifelong undiagnosed celiac disease"?   Just curious.  
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for food allergies and environmental allergies about 7 months before I started taking Naltrexone, so I don't think that is the cause for me, but that's interesting!  The main thing with the celiac thing that is throwing me off is these symptoms are lifelong, but I don't have intestinal damage to correlate with lifelong undiagnosed celiac disease.
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