Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

New Here, Have Some Questions

Barki

Recommended Posts

Barki Newbie
Barki
Posted

I'm new to this forum and have some questions for all of you with more experience. Briefly, I'm a Type I diabetic, have hypothyroidism and asthma. My cousin let me know that they'd recently discovered that she has celiac, as well as another cousin, all following the one bloodline. So since I guess statistically I'm at a higher risk I had bloodwork done. I don't know what test the dr ordered; I requested a celiac screening. The blood test came back negative, which from my research is not conclusive one way or the other. (For instance, my cousin had 2 negative blood tests, but her biopsy was positive. Another friend can't get a definitive dx with any test and she had a host of symptoms if she ingests gluten.)

I don't seem to have the glaringly obvious symptoms. Occasional intestinal issues, some other possible symptoms like depression, anxiety, some slight edema, fatigue, etc. All of which had previous been attributed to other things. I've been gluten and dairy free (oh, I already have a long history with dairy and know that I don't do dairy well) for a couple of months. There have been some times where I got some gluten (malt vinegar and other small exposures) and my kitchen is not 'kosher' in that I still share utensils/cutting boards/toaster, etc. I'm mostly gluten free, I guess. My intestines seem to be like they always have been mostly fine with the occasional hiccup (could this be because I'm still sharing utensils?), but my blood sugars have been doing much better, and the edema, anxiety and depression all seem to be some better. My asthma had been doing MUCH better, but we've just had a bit of cold weather and people are using wood stoves again, so have had to take some of my inhalers again this week.

I'm not even sure what my questions are! Sorry. I need some input on things to consider, I guess. I know that statistically a relatively large amount of people with celiac have no symptoms, and some have very few and more mild symptoms. I also know that statistically speaking a fairly large number of Type I diabetics are also celiac. However, I don't want to have an intestinal biopsy, since medical procedures are difficult for me to do (the diabetes/asthma thing)and there is always the possibility of a false negative there, too. Since my symptoms are not as obvious, should I pursue this further or not?

Thoughts? Suggestions?

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


psawyer Proficient
psawyer
Posted

Welcome to the board. :)

If you have celiac disease, "mostly" gluten-free won't cut it. Every bit of gluten does damage. You also heal continuously on a gluten-free diet. What you need to do is keep the rate of healing running faster than the damage caused by accidental ingestion of gluten. Deliberate ingestion of gluten will set you back in the race. Any value you perceive from it is completely false.

I am a type 1 diabetic. My repeated hypoglycemic incidents led me to ask questions. Sometimes, after food, my blood sugar would rise, but sometimes it would continue dropping. What the **?

Some carbs are absorbed in the stomach. I was getting those ones (juices, fruits), but others do not get absorbed until they are in the intestines (complex carbs such as bread).

It took years, and a random discovery by my wife, to realize that: (1) there is a correlation between type 1 diabetes and celiac disease; and (2) all of my mystery symptoms could be caused by celiac disease.

My PCP told my that is was a rare childhood disease, but agreed to have me tested for it. I had a very strong positive on the biopsy. I knew then what was causing my sickness, and have never intentionally eaten gluten again.

cassP Contributor
cassP
Posted

Barki- had you already been eating "mostly gluten free" at the time of your bloodwork?? this would make your tests very unreliable.

also, there are several different tests that can lead to a celiac dx... plus there's false negatives.

celiac and diabetes 1 have been linked before- dont give up on this thought process you're on-> MOST of us have experience with negative or inconclusive results.

good luck :)

Barki Newbie
Barki
Posted
  • Author

When I say "mostly gluten free" I mean that I have not knowingly ingested anything containing gluten for the last two months. I wasn't super vigilant with the peanut butter, and since it's a communal container for family use (and I have kids...) I'm thinking I may have gotten some exposure there. I've been trying to stick to metal utensils, I've been careful about cross contamination, etc., but there's no way I'll ever feel like I can say with supreme confidence that I've not had ANY gluten exposure. (And I'm wondering about some of the stuff that is even labeled as "gluten free"...one had soy as an ingredient, which made me wonder.)

No, I wasn't gluten free prior to the blood draw. I quit after my test was done.

As a diabetic I've not notice anything like having low blood sugars at odd times or anything like that. As I mentioned, ALL of my (possible) symptoms can, and have, been explained by other things.

I'm tired, though, of having everything chalked up to the diabetes/thyroid and it never resolves, no matter what I do. Fatigue and edema are two relatively mild problems (in the big picture)that I can't get resolved. And I do work on it! Since I've been eating gluten free, though, I've had more energy and my poor puffy feet and legs are doing better.

I guess I'm just a little frustrated because celiac seems to be, for some people, a bit hard to pinpoint. It's tough to talk with people and the medical professionals I deal with when I don't have some whiz-bang, concrete, 100-proof something to point directly to celiac. Nope, no tummy pain, no unexplained weight loss (I WISH!), nothing like a nice trail of definites to hand out and back up my choice to go gluten/casein free. I suppose I'll stick it out until my next dr. appt and see what my most recent labs suggest. UGH! If only the human body wasn't quite so complex! (...but then, maybe that wouldn't be so good, either! :D)

cassP Contributor
cassP
Posted

untill you DO get clear answers on a Celiac diagnosis or not- you should follow your gut and stay gluten free-

i just saw this tonight on facebook-> (i follow greenmedinfo on twitter & facebook- and they just started a new site exclusively for wheat & gluten)... they always have informative articles. this one is about wheat & diabetes:

Open Original Shared Link

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. knitty kitty
      - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed. Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
    2. knitty kitty
      - knitty kitty replied to Jordan Carlson's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Fruits & Veggies

      Hello, @Jordan Carlson, So glad you're feeling better. Tecta is a proton pump inhibitor. PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12. Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the...
    3. knitty kitty
      - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1. There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine. In Thiamine deficiency, the body...
    4. Scott Adams
      0

      Inmate with Celiac Disease Wins $630,000 After Jail Denies Gluten-Free Food

    5. trents
      - trents replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

      Wow! You're pretty young to have a diagnosis of SMA syndrome. But youth also has its advantages when it comes to healing, without a doubt. You might be surprised to find out how your health improves and how much better you feel once you eliminate gluten from your diet. Celiac disease is an autoimmune disorder that, when gluten is consumed, triggers an...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,018
    • Most Online (within 30 mins)
      7,748
    Nancy Adams
    Newest Member
    Nancy Adams
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      Positive biopsy

      By knitty kitty · Posted

      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed.   Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
    • knitty kitty
      Fruits & Veggies

      By knitty kitty · Posted

      Hello, @Jordan Carlson, So glad you're feeling better.   Tecta is a proton pump inhibitor.  PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12.  Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the production of digestive juices (stomach acids).  This results in foods not being digested thoroughly.  If foods are not digested sufficiently, the vitamins and other nutrients aren't released from the food, and the body cannot absorb them.  This sets up a vicious cycle. Acid reflux and Gerd are actually symptoms of producing too little stomach acid.  Insufficient stomach acid production is seen with Thiamine and Niacin deficiencies.  PPI's like Tecta also block the transporters that pull Thiamine into cells, preventing absorption of thiamine.  Other symptoms of Thiamine deficiency are difficulty swallowing, gagging, problems with food texture, dysphagia. Other symptoms of Thiamine deficiency are symptoms of ADHD and anxiety.  Vyvanse also blocks thiamine transporters contributing further to Thiamine deficiency.  Pristiq has been shown to work better if thiamine is supplemented at the same time because thiamine is needed to make serotonin.  Doctors don't recognize anxiety and depression and adult onset ADHD as early symptoms of Thiamine deficiency. Stomach acid is needed to digest Vitamin C (ascorbic acid) in fruits and vegetables.  Ascorbic acid left undigested can cause intestinal upsets, anxiety, and heart palpitations.   Yes, a child can be born with nutritional deficiencies if the parents were deficient.  Parents who are thiamine deficient have offspring with fewer thiamine transporters on cell surfaces, making thiamine deficiency easier to develop in the children.  A person can struggle along for years with subclinical vitamin deficiencies.  Been here, done this.  Please consider supplementing with Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) which helps immensely with dysphagia and neurological symptoms like anxiety, depression, and ADHD symptoms.  Benfotiamine helps with improving intestinal health.  A B Complex and NeuroMag (a magnesium supplement), and Vitamin D are needed also.
    • knitty kitty
      Positive biopsy

      By knitty kitty · Posted

      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1.   There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine.   In Thiamine deficiency, the body burns its stored fat as a source of fuel.  That fat pad between the aorta and digestive system gets used as fuel, too. Ask for an Erythrocyte Transketolace Activity test to look for thiamine deficiency.  Correction of thiamine deficiency can help restore that fat pad.   Best wishes for your recovery!   Interesting Reading: Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pubmed.ncbi.nlm.nih.gov/31089433/#:~:text=Affiliations,tissue and results in SMAS.  
    • trents
      Positive biopsy

      By trents · Posted

      Wow! You're pretty young to have a diagnosis of SMA syndrome. But youth also has its advantages when it comes to healing, without a doubt. You might be surprised to find out how your health improves and how much better you feel once you eliminate gluten from your diet. Celiac disease is an autoimmune disorder that, when gluten is consumed, triggers an attack on the villous lining of the small bowel. This is the section of the intestines where all our nutrition is absorbed. It is made up of billions of tiny finger-like projections that create a tremendous surface area for absorbing nutrients. For the person with celiac disease, unchecked gluten consumption generates inflammation that wears down these fingers and, over time, greatly reduces the nutrient absorbing efficiency of the small bowel lining. This can generate a whole host of other nutrient deficiency related medical problems. We also now know that the autoimmune reaction to gluten is not necessarily limited to the lining of the small bowel such that celiac disease can damage other body systems and organs such as the liver and the joints and cause neurological problems.  It can take around two years for the villous lining to completely heal but most people start feeling better well before then. It's also important to realize that celiac disease can cause intolerance to some other foods whose protein structures are similar to gluten. Chief among them are dairy and oats but also eggs, corn and soy. Just keep that in mind.
    • pothosqueen
      Positive biopsy

      By pothosqueen · Posted

      26F!
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.