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70SS396

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70SS396 Newbie
70SS396
Posted

Hello All,

Like many I

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OptimisticMom42 Apprentice
OptimisticMom42
Posted

You could just go for the genetic testing. Your genes are your genes regardless of what you eat! And for your own peace of mind go off gluten for a few days and then have a peice of toast and ruin your day off of work! Sorry, I was kidding. Have a gluten free brownie, they're pretty good!

70SS396 Newbie
70SS396
Posted
  • Author

Do most of you guys wake up with stomach pain/discomfort? Are you always aware of your stomach, in other words, it's always bothering you?

Any other thoughts? :)

ang1e0251 Contributor
ang1e0251
Posted

Yes, I used to always be aware of my stomach. There was pain, mild upset, and even burning. I had many more symptoms than that. But not gluten-free. Now my stomach feels normal. I thought I didn't remember what normal felt like!

If you're testing that soon, why don't you stay on the gluten for now? Make sure they take about 10 samples from different places in your small intestine. And do ask for the full panel of bloodwork. Just know that all of that can still show negative, either way, start the gluten-free right after your testing. You'll know whether it's helping or not. Some people know the first week, some after a couple of months.

70SS396 Newbie
70SS396
Posted
  • Author
Yes, I used to always be aware of my stomach. There was pain, mild upset, and even burning. I had many more symptoms than that. But not gluten-free. Now my stomach feels normal. I thought I didn't remember what normal felt like!

If you're testing that soon, why don't you stay on the gluten for now? Make sure they take about 10 samples from different places in your small intestine. And do ask for the full panel of bloodwork. Just know that all of that can still show negative, either way, start the gluten-free right after your testing. You'll know whether it's helping or not. Some people know the first week, some after a couple of months.

Thanks for your reply! I actually started gluten-free diet Monday out of desperation (I've been in a 8 day flare up and had been essentially starving myself due to fear of eating). And today I am just starting to feel somewhat better and the pain/bloating has subsided somewhat, GERD is still there (take Prilosec). This GI thing is a total nightmare, debilitating at times, then has you (me) wondering if its in my head with so many negative test (when I know its not).

I'm very active with muscle cars, drag racing, flying, but when this flares up, all I want to do is lay down on my left side. Anyway, again thanks for your response.

leadmeastray88 Contributor
leadmeastray88
Posted

I noticed that you didn't have a complete Celic panel done. These are the tests that should be included:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

The ones I bolded were the only ones you had done, and they are less specific for Celiac than the tTG and EMA one.

I would suggest to keep eating gluten for a few weeks and to take this list to your doc and get it re-done. You may be surprised! Have you talked to your doc about a biopsy?

Alternatively, you could just stick to the diet (strictly) and see how you do! That is, if you don't want/need a clinical diagnosis to stick to it, and wonder to yourself "do I really need to be doing this?" Many people here (including myself) have been self-diagnosed and are comfortable with that decision. You can't go halfway with this, it's definitely a learning curve but could potentially be extremely beneficial for you!

Good luck :)

Diva1 Enthusiast
Diva1
Posted
Hello All,

Like many I

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GottaSki Mentor
GottaSki
Posted

IF you are going ahead with the biopsy. My celiac doc at UCSD was insistant that I not go gluten-free until the procedure was complete -- it was frustrating to wait those extra weeks, but my biopsy (3 samples) did confirm celiac disease. He also wanted to make sure I didn't take any aspirin/ibuprofen(advil) for a couple weeks prior to the test.

I can tell you that I am pleased I waited and was confirmed.

What I can't tell you, but many others on this board can is... if you have already gone gluten-free and the gluten-free lifestyle has improved your health whether it is worth going back on gluten to possibly obtain an official diagnosis.

My teenage children have had a multitude of health concerns that could be celiac related, so with them we are going gluten-free first and if their health improves we'll have genetic testing done to confirm they have the genes.

Long way of saying -- it's your choice -- good luck to you!

gfb1 Rookie
gfb1
Posted
[snip]

My teenage children have had a multitude of health concerns that could be celiac related, so with them we are going gluten-free first and if their health improves we'll have genetic testing done to confirm they have the genes.

if your insurance will pay for the genetic testing and it will make you feel better... go ahead and do it.

however, if it will cost you out-of-pocket $$$, save your cash. you really won't get helpful diagnostic information.

the HLA-gene typing is not based on a causal relationship with celiac disease and will not provide additional information or risk components than those you already know (i.e., if you, or a primary relative have celiac disease...).

good luck!!

70SS396 Newbie
70SS396
Posted
  • Author

Thanks everyone! I was wondering if my test were complete from reading here thought it wasn't (I'm totally new to this world). So I am happy you guys confirmed that for me. My IBS is off the charts and eating causes it every time, I have told my GI Dr this for 10 years. I am not even sure my main GI doctor has tested me for this. I kinda remember it might have come up a few years ago, and he said I would have lost a ton of weight. (the last few months I have lost 25lbs) The test I just got was done by a new GI Dr at Mercy Hospital (Baltimore) that came highly recommended. Now I wonder why he didn't do the complete test.

This latest (flare up) about two weeks now has had me in overdrive trying to find the cause of this nightmarish so-called IBS. Up all night, living off YoPlus and wheat crackers (until Monday).

As I mentioned, I can honestly say I am never unaware of my stomach, in fact just being aware is a good day (minor cramping bloating, etc... to full blown feeling like someone is literally cutting my bowels out as my face turns blood red and my lips tingle. And even after I go to the bathroom, I am still in pain (usually less) and just don't feel right. Never thought I would share this information on a forum, but I am at my wits end with this and need to find out why and FIX it. I am NOT buying this IBS thing one bit! Not with my severity and frequency, plus it is starting to wear me down mentally now. Other then this GI thing I am healthy (my heart is doing better).

I'm a very active person and hate constant GI issues. I guess I should load on the wheat for my test. This ought to be fun. :rolleyes:

Thanks everyone for your input and advice, I really appreciate it! :)

ang1e0251 Contributor
ang1e0251
Posted

Some people call the IBS diagnosis "I Be Stumped".

70SS396 Newbie
70SS396
Posted
  • Author
Some people call the IBS diagnosis "I Be Stumped".

Exactly! The catch all phase! As so many sit in pain, discomfort and embarrassment with "IBS".

Even after not eating very much in almost two weeks now, I am almost doubled over now with cramps at work. There has to be answer.

70SS396 Newbie
70SS396
Posted
  • Author

Sorry for the long post - Interesting find. After a week of gluten-free food as best as I can tell, I did seem to feel better. Certainly the pain and bloating subsided (still was not regular regarding going to the bathroom). Plus I am eating very very little, so that is why I say

70SS396 Newbie
70SS396
Posted
  • Author
I noticed that you didn't have a complete Celic panel done. These are the tests that should be included:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

The ones I bolded were the only ones you had done, and they are less specific for Celiac than the tTG and EMA one.

I would suggest to keep eating gluten for a few weeks and to take this list to your doc and get it re-done. You may be surprised! Have you talked to your doc about a biopsy?

Alternatively, you could just stick to the diet (strictly) and see how you do! That is, if you don't want/need a clinical diagnosis to stick to it, and wonder to yourself "do I really need to be doing this?" Many people here (including myself) have been self-diagnosed and are comfortable with that decision. You can't go halfway with this, it's definitely a learning curve but could potentially be extremely beneficial for you!

Good luck :)

I have left a message with my new GI Dr and will discuss all these test you suggest. Thank you!! :)

  • 7 months later...
pdquick Newbie
pdquick
Posted

70SS396, what is this cardiomyopathy diagnosis? True cardiomyopathy requires its own work up and potentially genetic counseling and testing, as many cardiomyopathies have genetic causes. This is important for both you and your family members. In addition, if your cardiomyopathy is causing heart failure (meaning that your heart pumps less than adequately) it could be causing many of your symptoms. What does your doctor say about this?

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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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    • 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.
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      High DGP-A with normal IGA

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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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