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

Need Some Help And Opinions, Please

LoisArbuckle

Recommended Posts

LoisArbuckle Rookie
LoisArbuckle
Posted

For six years now I have had stomach and body issues that no doctor can explain. The problems are getting worse. My symptoms are bloating, indigestion, acid reflux, nausea and vomiting daily, constipation, headaches, and extreme moodiness. I've been through 5 doctors and now I do not have insurance and cannot pay for any testing. My aunt and 2 of her 4 children were just diagnosed with Celiac disease. We all have very similar problems. My aunt tells me celiac disease is extremely difficult to find in most cases and I should just try a gluten free diet for a while and see if it helps. I stopped eating gluten a week ago. After day 3, almost all of my problems had gone away. I accidently ate some wheat this morning and have been sick ever since. I had half of a beer last night and had a headache within 30 mins.

I have given up on doctors. I am deep in debt with medical bills and can't take it any more.

Can I diagnose myself (for the most part) by sticking to a gluten-free diet?

Your thoughts are greatly appreciated.

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

Celiac.com Sponsor (A8-M):


mushroom Proficient
mushroom
Posted

Hi, Lois, and welcome to the forum.

There are many of us on here who have never had any testing done. Some of us are related to celiacs, some of us through research have concluded that gluten could be causing our problems, some of us have found out that our problems were caused by something else. And a lot of us have found out that we also have issues with foods other than those that contain gluten.

You don't need anyone's permission to avoid gluten. But if you really need to KNOW that you are celiac then testing is the only way to find out for sure, even if a gluten-free lifestyle eliminates your symptoms. Issues that arise include the possibility (or even probability) of passing this on to your children; potential health and life insurance problems if you have the diagnosis on your records; not being able to stick to the diet without being "officially" diagnosed; problems with family members and friends accepting your need to be gluten-free if you do not have a diagnosis.

In the end it all boils down to what is right for you. Your symptoms and positive reaction certainly sound as though you should avoid gluten. But if you do want to be tested you must continue eating gluten for the results to be accurate. Ouch, I know this would be painful, but it is the only way to be 100% sure.

As for myself, I have never had any testing. I have a diagnosed celiac niece and her mother (my sister) is gluten free also, as is my husband. My sister and husband have never been tested either.

I hope this is of some help to you. Best wishes whichever way you decide to go.

Neroli

ShayFL Enthusiast
ShayFL
Posted

Hi Lois and welcome. A lot of people are self dx. You do not need a doctor's opinion to go on a gluten-free diet. But I will give a warning. If you are the kind of person that will "cheat" without an official dx, then you should get one. The reason being is that if you truly do have Celiac, everytime you eat gluten it will cause an autoimmune reaction and damage to your body.

Here is an example: Let's say you really are Celiac. So you go on a gluten-free diet and get better. But six months from now, you are feeling really good and you start to doubt that you even have a disease (this is common). So you say to yourself that you will eat a little gluten and see what happens. So you eat a pizza and everything seems fine. You conclude that you have no problem with gluten afterall and continue eating it. But you REALLY are CELIAC and you are getting major damage without symptoms (this happens and it is called "silent celiac" or "latent celiac". Then one day you dont feel well, you go to the doctor and they discover you have Type 1 diabetes or worse lymphoma. Because these 2 diseases are so closely related to Celiac, your doctor runs Celiac tests on you. And lo and behold you are Celiac afterall. But the damage is done. The results can actually be fatal.

So my advice to you is that if you are willing to stick with a gluten-free diet for the rest of your life without cheating, then do not worry about testing. It is always possible that you merely have an intolerance. But the cure is the same.....a gluten-free diet. The only difference is that an intolerance doesnt set off a cascade of autoimmune responses when you ingest gluten (although some think it can).

I hope this helps.

Lisa Mentor
Lisa
Posted

Hi Lois and Welcome!

Let's keep things simple in the begining.

You have several things working for you. You have a strong family history, you are symptomatic and you respond well to the gluten free diet. It may be very likely that you have Celiac, a gluten intolerance, sensitivity or an allergy to gluten.

If you would like to be tested, this is what you doctor should order:

Of the commercially available serologic tests that aid in the diagnosis of celiac disease, no one test is ideal. Using multiple serologies increases the diagnostic yield. Therefore, in the United States, screening in patients with possible celiac disease should consist of a panel of the following serologic tests:

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level.

Take one step at a time and take some time to walk around this site. It's the best around. And know that there are many here that are self-diagnosed and those are quite content with that decision. Others, would like something more definitive. That will be a choice you may need to make.

In the mean time, feel free to ask away. We are here to walk you though it.

nora-n Rookie
nora-n
Posted

If you want some testing, you need to do this right away since the tests are calibrated to only be positive with severe damage, and you start healing right away.

I was negative testing (had accidentally been gluten-free because of lowcarb) but I am not going back in gluten. I do not need a positive test. I even tested negative on the gene test.

nora

LoisArbuckle Rookie
LoisArbuckle
Posted
  • Author

Thank you all so much for your help. I really think this is the answer to my problem. I'm going to stick with the diet since all signs point to gluten intolerance. I've given up on doctors so I'm not worried about testing, it would probably come out wrong anyway.

Do you guys have any suggestions for good gluten-free bread?

happygirl Collaborator
happygirl
Posted

Against the Grain

Gluten Free 4 Me

Gluten Free Pantry bread mixes

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.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      130,033
    • Most Online (within 30 mins)
      7,748
    CaroleGinK
    Newest Member
    CaroleGinK
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Toddler recently diagnosed with Type 1 diabetes and need help understanding coeliac screening test results

      By trents · Posted

      Here is an article that gives an overview of all tests that can be used to detect celiac disease:    As you can see, the different tests vary in their degree of specificity and sensitivity. So, it is to be expected that if someone has celiac disease, not all the tests will be positive. Also notice that the tests break down into two large groups, IGA-based tests and IGG-based tests. There is also the EMA (Endomysial Antibodies) which is an older test and has largely been supplanted by he tTG-IGA which is less expensive to administer. So, when you report that the TTG score from your daughter's bloodwork is 22ku/l, we assume you are referring to the tTG-IGA test, which is the most popular test ordered by physicians when checking for celiac disease and considered to be the centerpiece test. However, you do not mention if there was a "total IGA" test run. Whenever the tTG-IGA is ordered, a total IGA should also be ordered to check for IGA deficiency. IGA deficiency will result in other IGA test scores, such as the tTG-IGA being artificially low, even falsely negative. This is especially true for young children. This is discussed in the article I linked. If your physician did not order total IGA test, this should have been done. Do you have a recourse for requesting such? I should also mention that you must not withdraw gluten from your toddler's diet until all testing for celiac disease is completed. Doing so would invalidate the testing.
    • Scott Adams
      Toddler recently diagnosed with Type 1 diabetes and need help understanding coeliac screening test results

      By Scott Adams · Posted

      I’m so sorry to hear about your toddler’s recent Type 1 diabetes diagnosis, and I understand how overwhelming it must feel to now be navigating possible celiac disease as well. The slightly elevated TTG antibodies (22 ku/L) with normal endomysial antibodies could indicate a few things—sometimes, mild elevations can occur due to factors other than celiac disease, such as recent infections or even Type 1 diabetes itself. However, the symptoms you’ve noticed (changes in stools, itching, and hair thinning) could potentially align with celiac disease, so it’s understandable why you’re concerned. Since the consultant wants to retest in 3–6 months, it may be because they’re assessing whether the antibody levels persist or increase, which would strengthen the case for further investigation (like a biopsy). In the meantime, if your daughter’s symptoms worsen or you feel uneasy waiting, it’s completely reasonable to ask for an earlier review or a referral to a pediatric gastroenterologist for further advice. Keeping a symptom diary until the next test might also help track any patterns. You’re doing a great job advocating for your little one—trust your instincts and don’t hesitate to push for more clarity if needed. Sending you lots of support.
    • mytype1diabetes
      Toddler recently diagnosed with Type 1 diabetes and need help understanding coeliac screening test results

      By mytype1diabetes · Posted

      Hi all, Posting from the UK.  My 2 year old was recently diagnosed with Type 1 diabetes. In the UK they routinely screen for coeliac disease. The test showed slightly elevated levels of TTG antibodies. The consultant wants to repeat these antibodies in 3-6 months time to determine clinical significance. In our letter it said "marginally elevated TTG antibodies (22ku/l), normal endomysial antibodies". I'm not exactly sure what this means, especially given one of the tests were within the normal range, and if we should be worried about the numbers. It is difficult to know if she has any "symptoms" but at the time she was diagnosed with Type 1 diabetes I noticed that her stools had changed. They are now probably a Type 6 on the Bristol stool chart. She seems to be quite itchy which is a recent thing and over the past week I have noticed some hair loss/thinning. I feel very worried and I'm not sure I can wait for her to be retested in 3-6 months time.  I'd appreciate any wisdom, advice or information you have. Thanks 🙏🏼
    • slkrav
      Glutened from hair conditioner- check your body products and makeup !

      By slkrav · Posted

      I was feeling really sick last week, for several days I kept thinking I was getting cross contamination. Typical symptoms like not sleeping well at night and waking up with widespread inflammation in all of my joints, foggy head and of course bowel issues. I had read the article recently that was talking about body products. I was starting to get depressed. I was showering and decided to read the ingredients in the products I've been using. It turns out that two of the ingredients in my conditioning hair mask contain GLUTEN. I felt really stupid for not checking before and I threw that away and also checked the ingredients of everything else I've been using. I've heard of skin issues from gluten containing body products, but this opens up a whole new way if being proactive. 
    • xxnonamexx
      Supplements for those Diagnosed with Celiac Disease

      By xxnonamexx · Posted

      I haven't taken blood test for deficiencies yet since self diagnosed but I started a Multi vitamin from reading consumerlabs Nature Made Multivitamin For Her 50+ with No Iron, Womens Multivitamin for Daily Nutritional Support, Multivitamin is actually good for men compared to the mens version since im 47 I figured this should be ok. I also just started taking Kirkland Signature Super B-Complex with Electrolytes which consumerlabs which is an independent lab that tests what is actually in it states this is a good balanced B complex vitamin where its not too much of any vitamin for you to take.  I was thinking of taking the Gluten test after the summer  ut I think if I reintroduce gluten for this test I will be so sick and make things worse. I heard there is a blood test coming in a year that they add gluten to the blood to test which would be nice but prob in a year or 2. 
×
×
  • Create New...