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Hubby Finally Getting Help!

littlemonkeys

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littlemonkeys Newbie
littlemonkeys
Posted

Hi there, this is my first post. My hubby has been diagnosed with IBS and panic attacks and mild agorophobia. Well, his panic attacks are trigered by his stomach problems, so after much procrastination, I convinced him to go to the new doc we have. Well, he was not much help-he did everything but the celiacs test-but his test came out being odd anyway, so they had him come back in. His potassium levels were high, his CO2 levels were low and his ALT and AST levels were boarderline high. So...instead of doing the dang test we wanted, they tested him for hepatitis of all things.

We finally convinced the doc to send him to a gastroenterologist. He was awsome! Yesterday was hubbys first visit and the doc was really nice and said he suspects celiacs as well-but he was also concerned about the possibility of Chrone's. So, he did an extensive blood test for about 8 different conditions/diseases, but we dont the results back for TWO weeks!! I hate waiting!

Besides the fact that my hubby has a huge number of the symptoms of celiacs, our daughter, who has been basically gluten free for the last month, has had huge improvments just in this short time. She is NOT completely gluten free-she still has the occasional bread product-but her chronic constapation is gone, she is off of laxatives, she has started babbling for the first time, she is extremely close to walking-she wouldnt do anything but crawl until the last two weeks-and she seems much less fussy. I dont know if I will have the heart to put her back on gluten to get her tested if her daddy comes back positive.

Anyway, I think I am well prepared if hubby does have it-we have already decided to all go gluten free if he does and I have already started trying gluten free products. Anyway, this is my little-long-intro! Thanks for reading!

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kvogt Rookie
kvogt
Posted

Your hubby might consider eliminating yeast for his IBS.

gf4life Enthusiast
gf4life
Posted

Welcome littlemonkeys,

I am glad that your husband is getting the help he needs in finding out what is wrong with him. If he does have Celiac Disease, please try to find a pediatric GI for your daughter (or the same one your husband sees if he sees children). You don't want to keep her 100% gluten free before testing, but I know how hard it is to watch the little ones suffer. I have three kids and for the past two years have fought for my own diagnosis, and then for my kids. I couldn't get any doctor to test them before I was diagnosed, since we didn't have a "family history" of celiac disease and their symptoms are atypical. <_< I now know that most celiacs have atypical symptoms and have finally gotten them to see a wonderful ped.GI at our local children's hospital. He is wonderful and will not stop looking until he knows what is wrong with my kids. He want's a 100% yes or no diagnosis. Which is what I want. Too many of us are passed off as you probably don't have celiac disease. :unsure: Well I for one needed a definite answer. I couldn't even get the doctors to test me, they said I didn't have it just based on my symptoms. I wouldn't accept that and now I know for sure that I DO have it and am gluten free. I feel so much better now! I just recently had to do a gluten challenge for the biopsy, and I am also waiting for my results. I don't like playing the waiting game either. I'm doing it with my kids blood test results and with my biopsy results...

Good luck in a quick diagnosis for your hubby! :)

God bless,

Mariann

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      High DGP-A with normal IGA

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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
      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.
    • 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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