Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Borderline Test Results


Jen2009

Recommended Posts

Jen2009 Newbie

I had the blood test done about a week ago, I just got my results back yesterday. They said that I have borderline celiac disease. I apparently had a 19...whatever that means. Is there such a thing as borderline celiac? I figured, you ether have it or you don't. Any help would be great. I do have 3 cousins that do have the disease.

Thanks


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



Celiac.com Sponsor (A8-M):



Gemini Experienced
I had the blood test done about a week ago, I just got my results back yesterday. They said that I have borderline celiac disease. I apparently had a 19...whatever that means. Is there such a thing as borderline celiac? I figured, you ether have it or you don't. Any help would be great. I do have 3 cousins that do have the disease.

Thanks

There is no such thing as a borderline Celiac....that's like being told you are borderline pregnant! :P

What probably happened is you haven't done enough damage to really spike your blood levels yet so consider yourself lucky. You are starting to show damage so it's time to cut out the gluten!

With 3 diagnosed relatives, it's a no-brainer. Welcome to the club! ;)

Jen2009 Newbie

Where do I begin to start? Is this something I should be concerned about?

Gemini Experienced
Where do I begin to start? Is this something I should be concerned about?

Yes, it is something to be very concerned about and all Celiacs should follow a strict, gluten-free diet. If you have any interest in being healthy in your later years, it is wise to take this condition seriously and eat well. Having said that, it is also important to learn to eat gluten-free without developing a fear about gluten in general. I would strongly advise you to buy and read Dr. Peter Green's book titled: Celiac Disease: A Hidden Epidemic. It's not one of those boring books about a medical condition but a great wealth of info about celiac disease and all you need to do to live gluten-free successfully. I would highly recommend it. It's very important to learn the correct way this disease works so you'll know when to be careful and when it's not important.

Are you close to your cousins that they could talk to you about it? Do they follow the diet well? It can be overwhelming at first but after a short time, with a little effort, you will master this lifestyle and, most likely, do well with it. There are so many things available today and so much good food sold mainstream now that going gluten-free shouldn't be traumatic. Has the doctor who ran your blood work recommending any more testing? I was diagnosed via blood work also and declined the endoscopy because I was very sick at the time and just wanted to get on with getting well. The diet was life changing for me and I have never felt better in my life. I hope it will work as well for you.

You will have to start with cleaning out your kitchen to make sure there is no residual gluten crumbs to muck up your food. It's a good excuse to clean the kitchen, anyway! How much do you know about the gluten-free lifestyle so people will know where to start with the advice? Are you married or with someone or do you have any kids? It is possible to have a mixed household but more difficult if there are young children present. It's hard to teach really young kids all the in's and out's of cross contamination but a compromise can usually be found.

Please give us some basic info about yourself so we can help!

Jen2009 Newbie
Yes, it is something to be very concerned about and all Celiacs should follow a strict, gluten-free diet. If you have any interest in being healthy in your later years, it is wise to take this condition seriously and eat well. Having said that, it is also important to learn to eat gluten-free without developing a fear about gluten in general. I would strongly advise you to buy and read Dr. Peter Green's book titled: Celiac Disease: A Hidden Epidemic. It's not one of those boring books about a medical condition but a great wealth of info about celiac disease and all you need to do to live gluten-free successfully. I would highly recommend it. It's very important to learn the correct way this disease works so you'll know when to be careful and when it's not important.

Are you close to your cousins that they could talk to you about it? Do they follow the diet well? It can be overwhelming at first but after a short time, with a little effort, you will master this lifestyle and, most likely, do well with it. There are so many things available today and so much good food sold mainstream now that going gluten-free shouldn't be traumatic. Has the doctor who ran your blood work recommending any more testing? I was diagnosed via blood work also and declined the endoscopy because I was very sick at the time and just wanted to get on with getting well. The diet was life changing for me and I have never felt better in my life. I hope it will work as well for you.

You will have to start with cleaning out your kitchen to make sure there is no residual gluten crumbs to muck up your food. It's a good excuse to clean the kitchen, anyway! How much do you know about the gluten-free lifestyle so people will know where to start with the advice? Are you married or with someone or do you have any kids? It is possible to have a mixed household but more difficult if there are young children present. It's hard to teach really young kids all the in's and out's of cross contamination but a compromise can usually be found.

Please give us some basic info about yourself so we can help!

Jen2009 Newbie

I am married with 2 children. My daughter was tested for Celiac about 4 months ago and she came back negative. Which is great. I'm having other health issues that lead to being tested for celiac. I have hashimoto's thyroiditis, I am also meeting with an ENT specialist tomorrow because my lymph node under my jaw looked susipcious on an Ultra Sound and CT. I am just so tired and I'm gaining weight like crazy, even though I am working out 3 to 4 days a week. I'm not a huge junk food eater. I don't eat alot. This whole thing is getting frustrating.

Gemini Experienced
I am married with 2 children. My daughter was tested for Celiac about 4 months ago and she came back negative. Which is great. I'm having other health issues that lead to being tested for celiac. I have hashimoto's thyroiditis, I am also meeting with an ENT specialist tomorrow because my lymph node under my jaw looked susipcious on an Ultra Sound and CT. I am just so tired and I'm gaining weight like crazy, even though I am working out 3 to 4 days a week. I'm not a huge junk food eater. I don't eat alot. This whole thing is getting frustrating.

I know your frustration well although I presented classically for celiac disease with the resultant malnutrition and weight loss so I had the opposite symptoms that you have. However, I also have Hashi's, which is one of the other autoimmune problems that go hand in hand with celiac disease. As far as your lymph node is concerned, another autoimmune problem called Sjogren's Syndrome can affect lymph nodes. I have that too (yup, 4 autoimmune problems) and it affects your saliva glands in your mouth and your tear producing glands in your eyes, causing extreme dryness. Some people with Sjogren's have a problem with swelling in the lymph nodes in the neck so keep that in mind when you see the ENT guy. I'm not saying you have it but Sjogren's is very often misdiagnosed as something else or not diagnosed at all.

Your children may or may not have celiac disease......they should be tested again if symptoms pop up as one blood test does not rule it out completely. I wouldn't worry about that unless you suspect it via symptoms. The blood work is also not totally reliable on younger children, either.

Are you planning on going gluten-free now or waiting to see other doctors? With your blood work and knowing you have other autoimmune problems to boot, which are associated with celiac disease, I would say it's time to be gluten-free. There will be a learning curve to it, especially with small children involved with regards to CC issues but you can work that out as it suits you and your family best. My personal opinion would be for you to cook everything gluten-free for the entire family and not kill yourself trying to cook separate meals. They can indulge in gluten containing foods outside the home, if they want, but your health and well being take top priority here and don't feel guilty about that. Gluten free is healthy for all involved and I promise you that their meals will not be compromised in nutrition and flavor by doing so. Gluten free does not mean crappy tasting food.....really! By going gluten-free within the home, if your kids run up and give you a hug and a kiss, you won't have to worry about ingesting any gluten that may be on their mouth and lips. I know that sounds crazy but if your kids are little, it can happen. Any crumbs left around on counter tops won't be a problem for you either.....they'll all be gluten-free. Don't become too worried about all of this....it will become second nature soon enough.

I can promise you that once gluten-free, you will feel 100% better and the weight will most likely come off. Many overweight Celiacs have found this to be true and I hope they chime in with their experiences.

Your husband must be on board with this and when that happens, it makes the transition much, much easier. If he freaks out about it a bit, we can help with that also. Most people resent or fear change in general but when you start the whole gluten-free journey, you'll realize it won't kill you and when you start to feel better, it will be so worth the beginning effort needed. Your kids need a mother who is healthy and, most important, how you react to this dietary change will impact them in a big way. If you take it in stride and transition with a positive attitude, they will follow.

Let us know what specific questions you have about getting started. I don't know what you may already know about it so need to know where to begin. The biggest thing is to clean your kitchen out of all the gluteny stuff and wipe things down so you can get ready to re-stock with the "good" stuff! ;) Take heart....Betty Crocker has just started a line of gluten-free goodies like cookies and cake. I haven't tried them yet but others here seem to love them. So you can still buy mainstream food from the store and your family will love the gluten-free goodies. My husband eats everything I cook and never complains....I actually have to yell at him sometimes to leave my gluten-free stuff alone so he won't eat it all. :lol: I do have a mixed household but we have no children and he is really good about the CC problem. However, I refuse to cook anything with gluten in it and he understands perfectly. You can do this!


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



Celiac.com Sponsor (A8-M):



Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,786
    • Most Online (within 30 mins)
      7,748

    Kate827
    Newest Member
    Kate827
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.4k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      @Manaan2, have you considered the possibility that she might be cross reacting to some food or foods that technically don't contain gluten but whose proteins closely resemble gluten. Chief candidates might be dairy (casein), oats (avenin), soy, corn and eggs. One small study showed that 50% of celiacs react to CMP (Cow's Milk Protein) like they do gluten.
    • Lily Ivy
      Gluten withdrawal is temporary, eat well!!
    • Manaan2
      I realize I'm super late in the game regarding this topic but in case anyone is still reading/commenting on this one-does anyone who is especially sensitive have their personal observations to share regarding Primal Kitchen brand?  My daughter was diagnosed almost 2 years ago with celiac and within 6 months, her follow up labs were normal and a year later vitamin levels significantly improving, but we are still battling GI symptoms; particularly, constipation, so much that she has been on MiraLax every day since she was 3.  We've managed to get her down to a half cap every other day but without that, she continues to have issues (when she has a known, accidental ingestion unfortunately it takes a lot more MiraLax and additional laxatives to help her).  I was searching for something else and found this and am wondering if anyone has any specific comments regarding Primal Kitchen.  I feel like we are so incredibly careful with diet, logging diet and symptoms to look for patterns (we've had multiple dieticians help with this piece as well), not eating out, contacting companies and of course, there is always room for improvement but I'm running out of ideas regarding where her issues could be coming from.  Even if the Primal Kitchen is contributing, I'm sure it's not the only thing contributing but I can't help but think there must be handful of things that are working together and against her.  The ingredients list distilled white vinegar, but also white wine vinegar and balsamic, then "spices" which I'm always cautious about.  However, after contacting the company, I felt more comfortable allowing her to consume their products but over time I've realized that the front-line customer service support people don't always provide the most accurate of information.  Thanks for reading to anyone that does.   
    • Bebee
      Thank you knitty kitty!!  I appreciate your help and knowledge!
    • knitty kitty
      Welcome to the forum, @Bebee, Yes, Celiac Disease has genetic commonalities with MS, hypothyroidism, arthritis, Reynaud, and rosacea.   Usually a gluten challenge is done before endoscopy with biopsies taken,  however I would not recommend a gluten challenge before endoscopy with biopsies for you since you have been gluten free for so long and have so many concurrent autoimmune diseases.   You can still have the endoscopy with biopsy samples taken now.  After several months with dietary changes, you can have another to compare results and check that intestinal health has improved.   You can get a genetic test for Celiac disease which shares genetics with other autoimmune diseases that you have.  Eating gluten is unnecessary for genetic tests. For the rosacea, get checked for SIBO (Small Intestinal Bacterial Overgrowth) that could be causing gastrointestinal symptoms as well as causing skin issues.  Our skin is a reflection of our gastrointestinal health.     Following the Autoimmune Protocol Diet has been helpful in keeping my own rosecea, eczema, and dermatitis herpetiformis and other autoimmune diseases in check.   Be sure to be checked for nutritional deficiencies that occur easily in gluten free and dairy free diets. Keep us posted on your progress! References: Clustering of autoimmune diseases in patients with rosacea https://pubmed.ncbi.nlm.nih.gov/26830864/ And... Celiac disease and risk of microscopic colitis: A nationwide population-based matched cohort study https://pubmed.ncbi.nlm.nih.gov/36939488/
×
×
  • Create New...