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

A Little History- Hope Not Too Long


ranger

Recommended Posts

ranger Enthusiast

I probably had problems before, but this is when my life became so impacted. Late summer of 2007-I was 61 and "retired" (never did work much, but hate the word housewife)! Had put in a big garden and was loking forward to havest time, when my doc diagnosed me with type II diabetes. Well, I put my head in the sand on that one- baught the monitor, but never used it ; picked up the metformin, but never took it. One day, I felt strange, so I picked up the monitor and, after 6 pricks, I got a reading. HI! Now, what the heck did that mean? I was expecting a number. So, I decided to READ THE DIRECTIONS? It meant that the number was over 600- get to the hospital. So, I took a metforman. I kept getting sicker and sicker. Weight loss, the big D. weakness lethargy. And I blamed it on the side effects of the meds After 4 months of complaining to my doc( who just dismissed me)and, due to the fact that the metforman was not keeping my bg down enough, he switched me to glyburide. That was at least keeping my fasting bg down to about 200, but I was still getting sicker and sicker. One day, I realized that I was content to just sit on the couch staring at th tv. Not even watching it! I didn't have the strenth to even walk to the garden, much less work in it. I had slowly arranged my life to be always near a safe bathroom, which really limited me. I had been walking 2-5 miles a day, active. Now I barely left the house. So, I went to the library and grabbed every book that had "reverse diabetes" in the title. Desparate to get off the meds - which I thaught were the cause of my problems- I settled on a high carb diet, which was the opposite of the diabetic diet. The first 3 days were a 'cleansing' diet of rice and bananas, followed by a strict vegan diet. After 3 days my bg was sky high, the thaught of rice made me want to puke, and I knew a vegan diet would never work for me and my husband. But, MY SYMPTOMS WERE 75% REDUCED!!! I looked back over my food diary, and realized that I was sick every Sat. Fri. was my big pasta/ pizza day. Bells rung I stopped eating wheat. I started getting better. My family didnt believe me. I got a lot off that " a little bit wont hurt you" kind of stuff. So I decided to get tested. I hadnt eaten wheat for a month when I took the blood test, so I pretty much knew that it would be negative . I had 30 days to do a gluten challenge before the biopsy and was advised to ingest 1 piece of bread a day. The test was negative. The doc informed my family that I was not celiac- my liver and pancreas were damaged and I was full of gallstones and diabetic (problems that I had never had before) but I was not celiac! But, I know my body. Against a lot of pressure from my family. I went gluten-free. I feel better everyday, although I still crap too much, but am eating a lot of fruits and veges The good news is that my blood sugars are nomal even though ive cut my meds in half and am about ready to quit them altogether. Anyone else have that happy situation? My fasting bgs are in the 80 to 100 range.I still have issues with my family and problems with the gluten-free diet, but learning every day. Thank you for being thier and listening to too long a story.


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



Celiac.com Sponsor (A8-M):



rinne Apprentice

Your story is not too long. :) I think you may have even left a few things out. :)

Congratulations on figuring out you feel better gluten free and seeing improvements!

I have no experience with diabetes but know that diet can make a huge difference and you are proof of that.

The doc informed my family that I was not celiac- my liver and pancreas were damaged and I was full of gallstones and diabetic (problems that I had never had before) but I was not celiac!

All symptoms that may be related to Celiac. There are a number of people on this site that are diabetic, I'm sure someone will be along to respond to your post. :)

ang1e0251 Contributor

Congratulations on taking control of your health!! Proactively insuring your health is the best gift you can give your family, whether they realize it or not.

RollingAlong Explorer

Congratulations!

DH's blood sugar issues (much milder than yours) improved when he went gluten-free. All his tests and biopsy were negative. The only postive test was with Enterolab. And of course, excellent response to the diet.

I read a book called "Life without Bread", which is really about a lower carb diet, not necessarily a gluten free diet like the title might suggest. This book discussed the idea that gluten can cause the pancreas and gall bladder ducts to spasm. It was very interesting, but I'm not sure I've ever seen that idea anywhere else.

I don't think it has "reversing" in the title, but Bernstein's Diabetes Solution is an excellent book and bloodsugar101 is an excellent website for all things glucose. There's also a forum for Bernstein. How were you diagnosed with T2 - with an OGTT?

ranger Enthusiast
Your story is not too long. :) I think you may have even left a few things out. :)

Congratulations on figuring out you feel better gluten free and seeing improvements!

I have no experience with diabetes but know that diet can make a huge difference and you are proof of that.

All symptoms that may be related to Celiac. There are a number of people on this site that are diabetic, I'm sure someone will be along to respond to your post. :)

Thanks for your comments. Am thinking about having another sonigram after about 6 months of being gluten-free just to see if theres any improvement in other organs. But first I have to stay gluten-free!

ranger Enthusiast
Congratulations on taking control of your health!! Proactively insuring your health is the best gift you can give your family, whether they realize it or not.

Thanks. Maybe I should impress on them more of the seriousness of the situation.

ranger Enthusiast
Congratulations!

DH's blood sugar issues (much milder than yours) improved when he went gluten-free. All his tests and biopsy were negative. The only postive test was with Enterolab. And of course, excellent response to the diet.

I read a book called "Life without Bread", which is really about a lower carb diet, not necessarily a gluten free diet like the title might suggest. This book discussed the idea that gluten can cause the pancreas and gall bladder ducts to spasm. It was very interesting, but I'm not sure I've ever seen that idea anywhere else.

I don't think it has "reversing" in the title, but Bernstein's Diabetes Solution is an excellent book and bloodsugar101 is an excellent website for all things glucose. There's also a forum for Bernstein. How were you diagnosed with T2 - with an OGTT?

The type 11 diabetes diagnosis was made through several fasting and non-fasting bg tests. Im not sure what an OGTT is. I think Bernsteins book was one I got. Will check out the websight.


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



Celiac.com Sponsor (A8-M):



psawyer Proficient

OGTT stands for oral glucose tolerance test. A sweet substance containing a known amount of sugar is taken orally after fasting, and the systemic response is measured by testing the blood glucose level at intervals.

Open Original Shared Link

ksymonds84 Enthusiast

Hello and welcome! Its wonderful that you discovered on your own your gluten intolerance. You may have tested (for now) as negative for Celiac but with your positive response with the diet, shows you have problems with gluten and are at least gluten sensitive. There are many articles about gluten sensitivity on the main page of this site that you could print for your family. Especially read the one's Dr. Lewey wrote. He is a GI that practices here in my hometown and a truly wonderful guy all around. I am betting that your family loves you and are just afraid for you. They will soon come around as they will see you as a much healthier and happier person gluten free.

celiacsoyfree Newbie

keep up the good work! :)

  • 2 weeks later...
one more mile Contributor

I have been testing in and out of diabetes for the last three years. My numbers are getting better now that I am gluten-free.

The first time my dr saw me, he read my labs, looked over his glasses and said you are about to have a hart attack. My hdl was 19.

it is now up to 38, so close the the 40 which is normal by some standards. It has suprized me how many of my numbers are now getting closer to were they should be then they were three years ago. I am tested every three months due to not having a thyroid.

This time he looked at my labs and said, you are almost there!

The thing that made the biggest difference for me was eating gluten free!

one more mile

TES Newbie

Your story is like mine. I have always had the energy of 3 people and last Febuary I got extremely sick after eating out and having a big greasy steak. I actually thought I was having a stroke (nueroapathy) or food poisoned, and then so tired I couldn't get off the couch. (Plus all the gut, brain, skin issues. started eventually) Went to several specialists and emergency rooms only to be told what I didn't have which was good, but didn't explain what was wrong with me. In July my doc told me I had diabetes and wanted to put me on all kinds of drugs. Being very active and never having any diabetes in family, I didn't want to take meds, so I bought meter and went on diabetes diet, not doing anygood My highest glucose number was 193 and only after eating something with gluten in it. After doc scaring me with diagnosis of diabetes and still being sick, my celiac neighbor suggested the gluten free diet, and my sugar numbers are completly normal now. I don't think I have diabetes, I think the gluten is the culprit and makes the sugar numbers high because organs can't work properly. The high number of 193 is when I ate a bowl of whole wheat cereal, and a piece of toast. I can drink a dr pepper, eat a potato and gluten free pizza all at the same time and have normal numbers. Of course after learning that all my symptoms are typical of celiac, makes me sure of staying on a gluten free diet and I continue to improve, most of my symptoms are gone. My brothers have all the symptoms and my family ancestory had all the symptoms, but they don't want to belive they have it. I guess when they get sick enough, they will go gluten free. I would like to have an offical diagnosis , but am so tired of doctors and misdiagnosis, and I won't ever knowingly put gluten in my system again. I would do a genetic test, if I could find a doctor or lab, anyone know of one located in kansas/Missuori area?

one more mile Contributor

that is really interesting. Thanks for backing me up on what I thought was going on.

My doctor does not think I am celiac due to the lack of D. but he does not grasp the

total change in my life since going off gluten.

maile Newbie
that is really interesting. Thanks for backing me up on what I thought was going on.

My doctor does not think I am celiac due to the lack of D. but he does not grasp the

total change in my life since going off gluten.

my Dr is the same, you can't have celiac/gluten intolerance because of no D....next time I am printing out the article (on this site here somewhere) that points out that only about 30-40% of ADULTS present with D, (I think that's the number, I remember it was below 50%) and I'm going to give it to him along with my enterolab results and then we'll have a chat! (btw, I can't totally blame him, he's just an average GP with a busy practice I believe he tries to keep up but he's only human!)

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - ShariW commented on Scott Adams's article in Frequently Asked Questions About Celiac Disease
      4

      What are Celiac Disease Symptoms?

    2. - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

    3. - Scott Adams replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

    4. - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      1

      My only proof

    5. - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      1

      Methylprednisone treatment for inflammation?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,908
    • Most Online (within 30 mins)
      7,748

    ebrown
    Newest Member
    ebrown
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • klmgarland
      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
    • Scott Adams
      Based on what you've described, it is absolutely possible you are dealing with non-celiac gluten sensitivity (NCGS).  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.   Your situation is a classic presentation: a negative celiac panel but a clear, recurring pattern of symptoms triggered by gluten. The symptoms you listed—particularly the extreme fatigue, bloating, neurological-psychiatric symptoms like depression and anxiety, and even the skin manifestations like facial flushing—are all well-documented in research on NCGS. It's important to know that you are not alone in experiencing this specific combination of physical and emotional reactions. The only way to know for sure is to commit to a strict, 100% gluten-free diet under the guidance of a doctor or dietitian for a period of several weeks to see if your symptoms significantly improve. It is also crucial to rule out other potential causes, so discussing these symptoms with a gastroenterologist is a very important next step.
×
×
  • 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.