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

I'm Seeing The Gi Today For The First Time And I'm Petrified

Electra

Recommended Posts

Phyllis28 Apprentice
Phyllis28
Posted

happygirl,

Thank you for sharing your story about ignorant docs. Those of us who have not had this experience will not be suprised if it happens to us in the future. It's a shame that they are out there and I am sorry you had to deal with them.

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

Celiac.com Sponsor (A8-M):


Electra Enthusiast
Electra
Posted
  • Author
Angie,

Why make the effort to go on the diet and not be diligent or careful? The only way the diet can be accurate as a diagnostic tool is to do it correctly. Anything less can confuse yourself and any doctor who wishes to treat you. I know there are a lot of uneducated and inexperienced doctors out there who will take every opportunity to discredit what you have to say. The trick is to have an accurate diet response one way or the other. At some point you are going to have to get really sick in order to get a positive diagnosis if that is what you seek.(that is if you really do have Celiac). The other alternative is to get serious on the diet and see what happens.

I have been diligent and careful with the diet. I think you misunderstood what I was trying to say. When I first found out that my blood test results were positive, I attempted to be gluten free, but I had a hard time interpreting all the ingredients so I at some things I shouldn't have. Then after about two weeks I realized that I was still eating some foods that contained gluten so I cut those out and worked even harder to be careful. The last two weeks I have been completely gluten free except maybe for an accidental glutening, but then that could be something else like a sensitivity to dairy, soy, or corn.

There are "no" advantages of an official diagnosis in the US except piece of mind. Anything else including the cost of gluten free food and health insurance is a negative.

I completely disagree!! If I have a difinitive diagnosis and I get rushed to the hospital and am unconscious and they give me mediacation with gluten and I end up in a wheel chair or dying then we have the right to sue to recover damages. That certainly would never make up for it, but with no diagnosis I have NO medical rights if they accidentely gluten me and they don't even have to take me seriously if I don't have the diagnosis. I would never want to sue anyone, but if I am no longer able to care for my kids because I'm confined to a wheel chair then I would certaily need some sort of settlement to help with that (if it were from them giving me meds that I shouldn't have). I admit that is a far fetched thought and probably would never happen, but it could and if I'm not prepared then I could end up losing a heck of a lot.

The other benefits are tax deductions. You can deduct the difference of your food for this disease. I'm not sure I'm going to do that, but I do need the diagnosis for that to be an option.

There are a ton more benefits in my opinion, and most doctors that I know will be more accepting to testing your children repeatedly if you have a difinitive diagnosis.

If I get very sick and have a difinitive diagnosis then social security benefits would be easier to collect. Again I NEVER want to have to be faced with that, but should I happen to be one of the people that the diet does not work for then I would need to have that option available to me.

The MOST IMPORTANT benefit to me is that there will be ONE more person with a Celiac Disease diagnosis and the more of us that are diagnosed the better it's going to be for all of us. The more cases that are diagnosed only forces the medical community to start taking it seriously and get educated about it. We already see this happening with all the TV shows and news program lately doing specials on this disease. People are becomming aware and more are being diagnosed, so people ARE taking notice.

If you think that a positive diagnosis will guarantee any more support among family/friends/co-workers etc. then you may be in for a surprise. "The average person does not care about this one way or the other"! The reason is simple and that is because they like the average doctor do not understand it.

I don't think it will guarantee anything, but I have seen my family, friends and community start researing and learning about this disease since I found out my blood tests were positive. They have all been very supportive and careing and they completely understand what this disease could have done to me. I know mostly average people and they DO care about this and most are very interested in learning more. The average person is not what I am concerned with though. My family, friends and community are what matters to me, and they all seem to want to be as supportive as they can.

My positive diagnosis has resulted in exactly no monetary benefits but the fact that I feel good every day is all the reward I want. I may be wrong but it looks to me like the only way you will be willing to get serious about the diet is if you have that diagnosis. If this is true good luck and I hope you get it.

Tom

I am not looking for any kind of monitary benefits, obviously that is the furthest thing from my mind. Health is of utmost importance beause If I'm not healthy then my entire family suffers. I was already serious about the diet even before my diagnosis, but some of us know how the medical community works and we are trying to prepare for the things that may happen in the future that could end up hurting us in the long run.

For me it's about being thorough and making sure that we've left no stone unturned. I need to be prepared for whatever may come my way, and If I do not think about these things and make a plan of action then it will all fall apart on me when I least expect it. For me that's part of my job as a parent. I have to cover my basis just in case.

Maybe that's just my way of dealing with things, but that's my choice, and I'm happy with my decision.

Nancym Enthusiast
Nancym
Posted
The other benefits are tax deductions. You can deduct the difference of your food for this disease. I'm not sure I'm going to do that, but I do need the diagnosis for that to be an option.

Just for the record, you have to have expenses that are greater than 7.5% of your AGI and you can only deduct the difference between the gluten-free food and the non-gluten-free food you would have eaten. The amount of bookkeeping to actually take the deduction, for probably the amount of return, is absurd.

Electra Enthusiast
Electra
Posted
  • Author
Just for the record, you have to have expenses that are greater than 7.5% of your AGI and you can only deduct the difference between the gluten-free food and the non-gluten-free food you would have eaten. The amount of bookkeeping to actually take the deduction, for probably the amount of return, is absurd.

Well for the average person it may not be worth it but you would be surprised at how much it would add up too. I already have to keep track of all my food because a portion of it is deductable already for my home business, so that's no big deal to me.

Nancym Enthusiast
Nancym
Posted

Well cool, if you're doing the bookkeeping anyway you might as well take the deduction! I still have nightmares of preparing my taxes when I was self-employed. :P

Judyin Philly Enthusiast
Judyin Philly
Posted

thanks so much for sharing your info and so glad you found a dr. who listens.

Please keep us posted on the biop results.

judy

Archived

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

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


  • Member Statistics

    • Total Members
      127,952
    • Most Online (within 30 mins)
      7,748
    Althea W
    Newest Member
    Althea W
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.5k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Celiac-safe home for summer rental in Washington DC

      By Scott Adams · Posted

      It's nice to see celiac-safe options out there for guest homes.
    • Scott Adams
      How many grams is there in one slice of wheat bread?

      By Scott Adams · Posted

      Your situation involves interpreting elevated Deamidated Gliadin Peptide (DGP) IgG levels, which can indeed be confusing without clear symptoms or additional diagnostic tools like a biopsy. Here’s a possible approach to help clarify your next steps: Understanding DGP IgG: DGP IgG is a blood test often used to help diagnose celiac disease, particularly in individuals with IgA deficiency. However, since you’ve confirmed you don’t have IgA deficiency, the focus should shift to other celiac-specific tests, such as tissue transglutaminase IgA (tTG-IgA) and endomysial antibodies (EMA-IgA), which are more specific for celiac disease. Elevated DGP IgG alone is not diagnostic of celiac disease but may indicate gluten-related immune activity. Non-Celiac Gluten Sensitivity (NCGS): You’re correct that NCGS does not typically show abnormalities in blood tests like celiac disease does. NCGS is diagnosed based on symptoms (e.g., bloating, fatigue, brain fog) that improve on a gluten-free diet, after celiac disease and wheat allergy have been ruled out. Since you don’t currently have symptoms, NCGS seems less likely in your case. Possible Next Steps: Monitor Symptoms: If you remain asymptomatic, it’s reasonable to continue eating gluten and retest after some time. This is because celiac disease can develop or become symptomatic later, and ongoing gluten consumption is necessary for accurate testing. Repeat Testing: Consider repeating the tTG-IgA test, as it is the most sensitive and specific for celiac disease. If this is also elevated, it strengthens the case for further investigation. Genetic Testing: If available, HLA-DQ2 and HLA-DQ8 genetic testing can help rule out celiac disease if negative, as nearly all celiac patients carry one or both of these genes. However, a positive result doesn’t confirm celiac disease, as these genes are common in the general population. Dietary Trial: If testing remains inconclusive and you develop symptoms, a supervised gluten-free diet trial might provide clarity. However, this should only be done after thorough testing, as going gluten-free prematurely can interfere with accurate diagnosis. Biopsy Limitation: Since a biopsy is not available in your town, you’ll need to rely on blood tests and clinical judgment. If your tests remain inconclusive but you develop symptoms, you may need to travel to a facility that can perform a biopsy for definitive diagnosis. In summary, if I were in your position, I would continue consuming gluten, monitor for symptoms, and retest with more specific celiac markers (tTG-IgA and EMA-IgA) in a few months. If symptoms develop or tests remain ambiguous, consulting a gastroenterologist for further guidance would be advisable. Always work with a healthcare provider to interpret results and tailor next steps to your specific situation.
    • trents
      What should I do with these test results?

      By trents · Posted

      The fact is, we know very little about the mechanism of NCGS at this point. We know much more about celiac disease. Some experts believe that NCGS can transition into celiac disease. And I do not agree with what you read about NCGS not producing any elevated antibody tests. IMO, and I have no scientific data to support this, it's just a hunch base on reading many, many forum contributor test result reports, elevated igg antibodies may signal a transition from NCGS to celiac disease.  But there are other things besides gluten that can cause elevated dgp igg and ttg igg antibody levels. So, yes. I would continue to monitor the situation if I were you and get regular testing. Not necessarily every 6 months but yearly anyway if you can. In the meantime, if you know gluten causes you unwellness, continue to avoid it.
    • Scott Adams
      Anyone else with very high HDL?

      By Scott Adams · Posted

      Statins are a widely prescribed class of medications used to lower cholesterol levels and reduce the risk of cardiovascular events, such as heart attacks and strokes. Extensive scientific research, including large-scale randomized controlled trials, has demonstrated their efficacy and safety for most individuals. Statins work by inhibiting an enzyme involved in cholesterol production in the liver, thereby reducing low-density lipoprotein (LDL) cholesterol, often referred to as "bad" cholesterol. Importantly, statins do not "remove all fats" from the body, as suggested in your post. They specifically target cholesterol synthesis and do not deplete essential fats, such as those required for brain function, hormone production, or nutrient absorption. The body still maintains its necessary fat reserves, including healthy fats, which are critical for physiological processes. Regarding the claim that statins cause internal bleeding by making blood vessels permeable, this is not supported by scientific evidence. Statins are not known to increase the risk of internal bleeding. However, like all medications, they can have side effects, such as muscle pain or, in rare cases, liver enzyme abnormalities. The benefits of statins in reducing cardiovascular risk generally outweigh the risks for most patients, particularly those with a history of heart disease or high cholesterol. The suggestion to use odorless garlic, magnesium, vitamin K, and calcium for heart health may have some merit, as these supplements can support cardiovascular function in certain contexts. For example, magnesium is involved in muscle and nerve function, while vitamin K plays a role in blood clotting and bone health. However, these should not replace evidence-based treatments like statins when prescribed by a healthcare provider. Always consult a medical professional before making changes to medication or starting new supplements, as individual health needs vary.
    • trents
      Colonoscopy with large area of inflammation

      By trents · Posted

      Just judging from the reports we get from forum members sharing their endoscopy results, very common. But we also get a lot of reports of inflammation in those areas coupled with a negative biopsy for celiac. But I wonder if in a lot of those latter cases we are seeing NCGS or a transition from NCGS to celiac. I have no scientific data to support that. It's just a hunch.
×
×
  • Create New...