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Finally A Great Doctor

sarahjo

By sarahjo
in Doctors

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sarahjo Newbie
sarahjo
Posted

my doctors office asked me for advice on celiac, they have done the work and I have been raising a celiac toddler. (They just agreed with me that she has it this week) I have never been so suprised. I put my foot down and never gave up, i knew she had celiac, they tried to prove it medically, but she got sick and sicker before they could get accurate test. (She does carry the gene for celiac,) the diet is what has opened their eyes. i do think you should be tested, but my daughter is already on a feeding tube, in the 5 months she ate gluten she developed asthma, sleep apnea(possibly), iron deficieny. i know she will improve with time. I just wanted to say thank you to the doctors that do listen to their patients and not just the books.

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flagbabyds Collaborator
flagbabyds
Posted

i'm glad you got such a good doctor, so many of us have not been that fortunate, but glad you are, it's very nice to get a good doc.

TCA Contributor
TCA
Posted

My kids drs. are convinced for the most part too. It's to the point that the ped GI asks me if I want any other tests run. Their pediatrician took a continued learning type of class on Celiac to help my kids. It's so great when they care. I'm also glad your doctors are listening. I've been thinking about you. How is your little girl doing?

sarahjo Newbie
sarahjo
Posted
  • Author

We are so lucky to have a great doctor, but don't get me wrong all the other specialist don't agree. but as long as out main doctor does, that is all that matters to me. katarah has already started to feel a little bit better, not a whole lot but better. I am exhausted, drained, yet at the same time relieved. you probobly never hear someone say yeah i have celiac. but after all that we have been through i am. last year they investigated me for child neglect, that is when I started the diet. I have been in the childcare business for 10 years. i never would neglect my children, i probably do the opposite, they are a little spoiled. it is so sad the things celiacs have to go through just to have people listen. i still have problems with family and friends understanding from before and now again. i would love some food ideas. don't worry about her milk allergy, i have learned to substitute. it is hard to start the diet again, and adding the milk allergy with it. but hey i have an answer.

Guest nini
Guest nini
Posted

I'm glad you have a good one... I'm lucky that my daughter's pediatrician supported me as well, sometimes you have to be your childs best advocate and fight for what you know is right. I'm sorry you were investigated for neglect. At one point I was threatened with that because my daughter was failing to thrive. They assumed I wasn't feeding her. They had a hard time grasping that she just wouldn't eat (probably because eating was too painful).

keep me posted on how she does. My daughter was 3 when I put her on the diet and now at 6 she is so very very healthy! Her current Dr. is amazed at how healthy she is.

floridanative Community Regular
floridanative
Posted

Kudos to you for not giving up! That is so great to hear you have someone who will listen and knows that you know yourself and your kids better than any doctor ever will.

tarnalberry Community Regular
tarnalberry
Posted

I'm glad your doctor was willing to listen to dietary results. Some will, and it's a good thing when they do. Diagnostic tests on young children are notoriously slippery, and sometimes you just need them to be healthy, period!

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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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