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Should I See A Specialist?

francelajoie

By francelajoie
in Doctors

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francelajoie Explorer
francelajoie
Posted

I need advice,

I was diagnosed gluten intolorent and possible Celiac by my family doctor. I just found out that there is a Celiac center less than an hour from here. Should I go?

I've been gluten free since last July and I feel great. Would a diagnosis change anything?

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jerseyangel Proficient
jerseyangel
Posted
I need advice,

I was diagnosed gluten intolorent and possible Celiac by my family doctor. I just found out that there is a Celiac center less than an hour from here. Should I go?

I've been gluten free since last July and I feel great. Would a diagnosis change anything?

Nope--if you feel great on the diet, there's nothing that a specialist can do that being gluten-free can't. The diet is the only treatment for Celiac. Glad to hear you're doing so well :)

Ursa Major Collaborator
Ursa Major
Posted

I agree, it would just be a waste of time and money. Obviously you know what you're doing, you feel great, no need to bother.

mmaccartney Explorer
mmaccartney
Posted

I've been exploring this myself. I am pursuing a formal diagnosis from an MD. Why? I believe that Celiac disease (and my associated arthritis) qualify as a disability under the americans with disabilities act. A formal dx would give me protection under that act.

Now, if you are looking for more answers for your own peace of mind, I'll give you the advice my rhuemotologist (whos mother is a celiac) gave me:

"Why do you want further testing, or further diagnosis? You already know what is wrong with you, you changed your diet and your getting better...what more do you need to know?? Stay of gluten, and get healthy!"

I still wanted more answers, so I ended up at Enterolab. The results there confirmed everything, and surprised me with the fact that I have a celiac gene (DQ2) and a gluten intolerance gene(DQ3). The casien intolerance surprised me as well....it wasn't the cheapest testing at $390 BUT my insurance is paying for it!!!!!!!!

the gene testing results were important to me as I have two sons. Having two genes tells me that there is a 100% chance that they recieved at least one of the genes from me. Thus they are presdisposed to celiac, or gluten intolerance, or both (like me). This has spurred me to take action to have them further tested as they may be reacting with no visible symptoms!!!!

francelajoie Explorer
francelajoie
Posted
  • Author

Thanks guys...I think I will just continue the diet. At least I know the center is there if I ever need to go.

Eugene Newbie
Eugene
Posted
I still wanted more answers, so I ended up at Enterolab. The results there confirmed everything, and surprised me with the fact that I have a celiac gene (DQ2) and a gluten intolerance gene(DQ3). The casien intolerance surprised me as well....it wasn't the cheapest testing at $390 BUT my insurance is paying for it!!!!!!!!

Michael,

What is Enterolab anf how does one get tested?

TIA, Eugene

Jnkmnky Collaborator
Jnkmnky
Posted

A dx isn't going to make your life better. There are things you will be UNable to do if you have a dx of Celiac disease. Stuff like Joining the military, becoming a priest, getting good health insurance. You can face obstacles with a dx of celiac disease. Best to keep it quiet, imo. There really is no benefit that I've encountered with this dx... sometimes you hear that you can itemize the food costs on your taxes, but that's such a load of bunk. Who's done it? There's nothing to gain with this dx OTHER than your HEALTH!

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      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 😅
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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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      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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