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Newbie... Possible Celiacs?

njm22

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njm22 Newbie
njm22
Posted

hello. im new here and i wanted to get some input or thoughts on some symptoms ive been having for a long time. im 22 and for as long as i can remeber ive always had stomache aches all the time and latley they have gotten worse. i also get canker sores all the time and im constanlty feeling hungry no matter what i eat and tired. i want to go to the doctor but im afraid they may not think much about it. any thoughts?

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nasalady Contributor
nasalady
Posted
hello. im new here and i wanted to get some input or thoughts on some symptoms ive been having for a long time. im 22 and for as long as i can remeber ive always had stomache aches all the time and latley they have gotten worse. i also get canker sores all the time and im constanlty feeling hungry no matter what i eat and tired. i want to go to the doctor but im afraid they may not think much about it. any thoughts?

Those symptoms could possibly be from celiac disease or gluten intolerance. You should definitely go to a doctor. It would be best to go to a gastroenterologist who is up on the latest info about celiac disease if possible. Go to the "search" box on this site and type in "doctor" and the name of your city (or the closest big city). That will tell you if anyone has ever posted about a good doctor in your area. Whomever you see, tell him/her you want the full celiac panel run, which consists of:

1.Anti-gliadin antibodies (AGA) both IgA and IgG

2.Anti-endomysial antibodies (EMA) - IgA

3.Anti-tissue transglutaminase antibodies (tTG) - IgA

4.Total IgA level.

Don't worry if the doctor tries to brush your concerns aside. Be calm and polite but firm; say that you want to be tested whether or not the doctor thinks it's necessary. I know it's hard to be assertive with a doctor at 22, but try! :)

If you are going to be tested you must keep eating plenty of gluten-y foods (bread, pasta, crackers, etc)! Otherwise you risk a false negative. You should also ask for a biopsy of the small intestine. Ask for them to take at least 6 samples while they're in there.

Good luck!

JoAnn

mom26boys Apprentice
mom26boys
Posted
hello. im new here and i wanted to get some input or thoughts on some symptoms ive been having for a long time. im 22 and for as long as i can remeber ive always had stomache aches all the time and latley they have gotten worse. i also get canker sores all the time and im constanlty feeling hungry no matter what i eat and tired. i want to go to the doctor but im afraid they may not think much about it. any thoughts?

I'm a newbie too, but I wanted to respond to your post. Definitely go to the doctor! I'm 42 and have been battling problems my whole life. Because I'm obese, I've always been told to go on a diet or get weight loss surgery. The problem is that they assumed obesity was the cause of my problems and never thought it was a result of them. I wish I had known about gluten at 22 and have saved myself 20 years of suffering. You are the very best judge of what is going on with your body. If you know something isn't right then don't give up until you find a doctor that will listen to you. They don't have to live with your symptoms, you do. Like the previous poster said, be polite but firm and get the answers you are looking for. Good luck!

haylols Newbie
haylols
Posted

Hi there, I'm hoping someone can give me some advice!!! I'm a 24 year old girl and have been suffering with stomach problems nearly all of my life!!!

When I was 4 years old I was admitted into hospital with gastroenteritis and developed a protein infection in my stomach at the same time. Needless to say i became extremely ill and was kept on fluids as i was unable to keep anything down (or up!) for two weeks. After that i was plagued by gastroenteritis at least once a year, sometimes twice every year until I was 16 then it seemed to die down until i was 19 and got hit hard again!!! I was diagnosed with irritable bowel syndrome when i was 17 as I frequently suffer with bouts of chronic diarrhea and stomach pain which alternates with bloatedness and constipation sometimes lasting 2 weeks until i have to take laxatives to go to the toilet! I was put on an antispasmodic medication called propantheline which seemed to help although i do have put up with the bowel changes with less pain and less diarrhea. However last december I got really sick. I put it down to lots of rich food at christmas, and the stress of working 7 days a week. I was ill over christmas and admitted into hospital for a further week over the new year. I had chronic diarrhea, stomach pains to the point where i cried out everytime I was touched, bloatedness, and nausea. The docs thought it might be appendisitis so I was given ultrasounds, blood tests, rectal examinations - you name it i had it!! After I seemed to get better on a nil by mouth diet and constant fluids, I was allowed to go home. I have since had two colonoscopies the first was incompleted due to the level of pain it caused me, so the second had to be done under a general anaesthetic. It came back normal as did all of my biopsies. They were checking me for chron's disease or ulcerative colitis. Now after giving up dairy and alot of bread and pasta I seem much better and have hardly any symptoms so now they want to test me for celiac disease!!! I thought that was gliten and nothing to do with dairy products....I just wondered if anyone else has ever experienced anything like this? I've checked out celiac symptoms and to be honest I tick quite alot off including the joint pain and arthritis which the doc says I am developing in my hands already!! I'm always tired, even beforfe working 7 days a week i would fall asleep early in the evening or of an afternoon at the weekends. Don't get me wrong i'm not contanstly ill, but I seem to be having a lot of flare ups of whatever it is I've got lately and i'm fed up! My weight keeps going up and down and I can't maintain it...which i can't understand as i don't eat junk food very often! I fluctuate between 7lbs heavier and 7lbs lighter!?!?!?!! And i'm fed up with being told how pale and pasty I look!!!!!

I'm just worried about what comes next if it turns out not to be celiac!! I don't think i could go much more testing!!

Thanks!!!

ang1e0251 Contributor
ang1e0251
Posted

I'm so sorry you're feeling so bad! You sure do show a lot of the signs of celiac disease but to be tested you know you must go back on the gluten. If you find it impossible to do so, then your choices are to carry on with the diet without a dx or see if your dr of another dr will agree to dx you based on dietary response and other factors. Other factors could be family history of like illnesses, a gene test to see if you carry the common genes recognized for celiac disease/GI or a positive test DH. You didn't mention having rashes but if you do, a positive test for DH is a positive dx.

Let us know how you're doing!

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      High DGP-A with normal IGA

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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.
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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

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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.
    • 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.
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