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

?'s About Celiac In Adults... Symptoms And Diagnosis...

rgeelan

Recommended Posts

rgeelan Apprentice
rgeelan
Posted

Ok for almost a year now my health has been going down hill. I have been getting more and more tired and forgetfull and my stomach is often upset. I had a Hystorectomy in August and since then have gotten severly worse. They thought I was anemic at first, but they tested and I was fine, they suspected my Thyroid was too low by the tests though so they put me on medication which hasn't really taken away the majority of my symptoms.

Anyway long story short... My son has Celiac and was diagnosed 2 1/2 years ago. We know either myself or my husband is a carrier and could develope it but I have been tested in the past *by blood* and was negative. With feeling so bad and not getting answers from my dr's I started looking into it and was reading that it could cause all the symptoms I am having even the Thyroid problems. So a week ago I got sick of getting the run around from my Dr's and put myself on a Gluten Free diet to try it out. Within 24 hours I had tons of energy that I didn't normally have! As the days have gone on my energy has increased. I am still tired as I am not sleeping well at night, but I have lots of energy and am getting things done around the house now... I am still forgetful, but my stomach problems started to improve after a few days... I don't really know if this is coincidence or the diet though, but I figured I would keep it up another week or so then challenge and see what happened.

Then yesterday we went to Bowling and ate at the bowling alley! My son has been eating there for a year and never actually complained that it caused him any problems so I just ordered what I always get him. By the middle of the 2nd game I was feeling sick and nausiated. All today my stomach has been very upset and I have felt nausiated. I don't have the energy level today and am just irritable and feeling horrible!

I am wondering if I could have been glutened by cross contamination at the bowling ally and that is what caused me to feel this bad? I am not sure if I would have a reaction like this after only 1 week on the gluten-free diet though. I did ask my son if his stomach ever hurts after eating there and he said yes, and I asked if he noticed that any food caused it and he said the french fries and sometimes the chips *nachos*. Well the fries are fried in a common oil so there is a chance of cross contamination but since he had never mentioned this on his own I never thought it was a problem. Now I am thinking it might be!!!

Am I totally parinoid or could I be onto something here? I have an appointment with my Dr tomorrow morning and was thinking of bringing this up and asking about being retested for Celiac because of these symptoms and how after 1 week on a gluten-free diet I started feeling better... But I don't want to come across as totally crazy. I'm just sick of being sick and desperatly want an answer!

Any advice would be greatly appreciated. Thank you!

Rebecca

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

Celiac.com Sponsor (A8-M):


Guhlia Rising Star
Guhlia
Posted

It definitely sounds like you have a problem with gluten. Since you've already been mostly gluten free it's likely that if you got tested it would turn up negative, whether you have Celiac Disease or not... You already know that gluten is a problem for you, stick with the diet. OR... You could try Enterolab testing. You don't need to be actively eating gluten for the stool tests.

Please don't take this the wrong way, but if your son is even getting a minute amount of gluten, he is likely harming his intestines. Damage that is caused now could end up being irrepareable and cause him problems for the rest of his life. I'm not trying to scare you, but he really, really needs to be more careful. Cross contamination is very serious when you have celiac disease. He may not always get a stomach ache, but if he is consuming small amounts of gluten, he is hurting his body. Please, please be careful and make sure he understands this.

rgeelan Apprentice
rgeelan
Posted
  • Author

Thanks Angie... We normally try to be very careful and even the girls that work at the bowling alley are helpful and careful when preparing our food. I have read all the packaging and they let me know if any of their products change or anything like that. They get the hotdogs strait from the back and wrap them in a paper towel and microwave them, so they have never been near the hotdog thing with the bun tray in it... They always make us fresh fries without any other food fried with them also. But the fries are still in a common oil so I wonder if they could pick something up. That has been the only iffy thing that I could think of but he never mentioned that they made him feel sick *till I asked directly!* so I thought they were ok... Now I am thinking I may have found the reason to his last totally random and unexplainable attack... No more fries for us... :(

I did eat fairly gluten free before going on the diet because I cook our main meals gluten-free, but I still would have some sort of gluten food daily till this diet. I wonder if that could have been just enough to keep my blood from testing positive though? I have had to give up my snack foods and treats and it has been a little hard to change my eating after 28 years, but I was feeling so good till today that it kept motivating me to keep up the diet! Today I am feeling horrible and I don't have the energy or desire to cook. I'm almost tempted to just eat a ton of gluten at dinner time and see if it really makes me sick. Not that I want to feel any worse, but I just want to make sure it isn't all a coincidence, you know??? I hate the thought of having to give it all up, but at the same time if there is a chance I have celiac I don't want to risk the damage it can cause just to be able to grab a quick easy snack when I want one... Unfortunatly I think without a positive medical diagnosis our dr and insurance won't consider it a posibility... I know it was a PITA getting it 'official' for my DS even though his first blood test was highly positive and the Dr really had no doubt, he had to have the biopsy and a repeat blood test for insurance and his medical file...

Guhlia Rising Star
Guhlia
Posted

I know exactly how you feel... My daughter is 100% gluten free with no diagnosis. She's actually had no testing whatsoever. I just feel as though it's more important for me to keep her gluten free than it is to have the convenience of gluten. Plus, I'm so sensitive that our house has to be gluten free anyway. Every time she ate gluten or played with Play-Doh I would end up getting sick, so it's just not worth it to me. Plus, she was beginning to show mild symptoms.

As for snack foods, there are many gluten free quick snacks, many that are inexpensive as the glutenous stuff. Fresh fruit, gluten free nuts, baby carrots with ranch dressing, Gibbles or Utz potato chips, Glutano or Ener-G pretzels, Kraft string cheese, some Jell-O pudding cups, Kozy Shack rice pudding... The list goes on and on. Being gluten free, once you get used to it, it pretty simple and the foods will appeal to you more and more the longer you've been gluten free.

rgeelan Apprentice
rgeelan
Posted
  • Author

I have a lot of gluten-free 'snack' foods for my kids but just am being stubborn about giving up MY foods. lol! I think unfortunatly it is going to come down to our entire house being gluten-free eventually. My girls GI wants me to wait till after their next biopsy to put them gluten-free. Their first biopsy showed some possibility of food intollerance though so she said it could be an early sign of celiac for them... My DH may not be happy if I stop buying any gluten foods but I think he will survive and it will be easier for us to stay gluten-free. I know I had to pack all the gluten snack foods in a plastic tote and put it in the garage just to remove the temptation for me. lol! It did make it easier without them around though.

I was looking at the Enterolab site... I will have to ask my Dr if she knows anything about them and if our insurance would reimburse for it. It might be worth doing it on all of us if they would but we just don't have that kind of money if it all had to come out of pocket...

Ursa Major Collaborator
Ursa Major
Posted

Rebecca, I doubt that the results you had with the diet, and getting sick at the bowling alley are a fluke at all. I truly believe you need to be gluten-free, as well as your girls. If they had ANY inflammation of the bowels, they need to be gluten-free! For your doctor to say they should eat gluten until their villi are completely destroyed is very irresponsible. They have enough symptoms now to warrant an immediate gluten-free diet, before they get even sicker. In young children the tests are highly unreliable, and often result in false negatives. The best test with little kids is to try the diet. If it works, you have your answer. No doctor needed to 'allow' you to put them on a gluten-free diet, it's your choice, as it's a healthy diet.

It sounds to me like the sooner you make your whole house gluten-free, the better.

Guhlia Rising Star
Guhlia
Posted

I totally agree with Ursula about your girls...

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

Celiac.com Sponsor (A8-M):


rgeelan Apprentice
rgeelan
Posted
  • Author

Ursula... They didn't have damage to their intestines, but they did have lukeocytes in their intestines which the GI said is a sign of intollerance and could be the first sign of celiac for them... However we have put them on the gluten-free diet in the past but it hasn't changed their symptoms which is why the GI said to wait till their next scope. Part of their problems improved when we figured out the lactose/dairy issues. But I am honestly suspecting that the lactose and dairy problems could just be early symptoms of celiac...

I saw my Dr this morning and went over all of it with her and she seriously thinks I need to go gluten-free from this point on. The part of my thyroid that was low is now normal however my total thyroid is shutting down so she said upping the medicine would be bad and probably not help with how I am feeling anyway! She wants to see me back in a month and is hopefull that after a full month of being gluten-free that more than just my energy level will have improved!

Last night I cheated since I already felt sick and we went to Olive Garden... I ate all my pasta and have felt horrible ever since then. I am totally nausiated and keep getting stomach cramps and my energy is plumited today! So again this morning I started back on the gluten-free diet in desperate hope that I will start to feel better again in a few days.

I talked to my insurance about the Entrolab tests and was told that they would not be covered and I probaly wouldn't even get a partial reimbursement for them... I still am strongly considering doing them, but have to find the money for them which is kind of non existant right now... I am considering asking my mom if I can borrow the money from her, but I don't want to put her in a bad place financially either... I just think it would be good to have some testing done also. My husband said we should probably have all of us tested, but that's 5 people at $369 each and we really can't afford that. lol!

Thank you for all your advice and concern. I think our house is going gluten-free from this point on....

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,138
    • Most Online (within 30 mins)
      7,748
    Jamy
    Newest Member
    Jamy
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

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



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Sarah Grace
      Headaches / Migraines and Hypoglycaemia

      By Sarah Grace · Posted

      Dear Kitty Since March I have been following your recommendations regarding vitamins to assist with various issues that I have been experiencing.  To recap, I am aged 68 and was late diagnosed with Celiac about 12 years ago.  I had been experiencing terrible early morning headaches which I had self diagnosed as hypoglycaemia.  I also mentioned that I had issues with insomnia, vertigo and brain fog.   It's now one year since I started on the Benfotiamine 600 mg/day.  I am still experiencing the hypoglycaemia and it's not really possible to say for sure whether the Benfotiamine is helpful.  In March this year, I added B-Complex Thiamine Hydrochloride and Magnesium L-Threonate on a daily basis, and I am now confident to report that the insomnia and vertigo and brain fog have all improved!!  So, very many thanks for your very helpful advice. I am now less confident that the early morning headaches are caused by hypoglycaemia, as even foods with a zero a GI rating (cheese, nuts, etc) can cause really server headaches, which sometimes require migraine medication in order to get rid off.  If you are able to suggest any other treatment I would definitely give it a try, as these headaches are a terrible burden.  Doctors in the UK have very limited knowledge concerning dietary issues, and I do not know how to get reliable advice from them. Best regards,
    • 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
      Finding gluten free ingredients

      By captaincrab55 · Posted

      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.
×
×
  • 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.