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TombRaiderShan

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TombRaiderShan Newbie
TombRaiderShan
Posted

Hi everyone,

I am new to all of this. My story actually begins with my mom. For years she had digestive problems, but everything was going severely downhill early last year. She finally had her gall bladder out, but still wasn't well. Finally, she had the blood test, then the endoscopy which determined she had flat villi. She also dropped down from 150 lbs to 121 lbs in just a few months. When she told me all of this, I was thinking that my digestive woes could be due to celiac disease.

I went to my doctor and wanted a full panel done including a celiac test. Well, he flat out told me that there was no way I could have celiac disease (since I am overweight), but he was happy to diagnose my IBS. I wanted the blood test, but he wouldn't give it to me, he told me that even if it was positive, no hospital in the area does the endoscopy. I would have to drive 2-3 hours to have it done. He told me that I should just go on the gluten-free diet and see if I feel better. Why are doctors so uneducated about celiac disease? He even questioned my mom's diagnosis since she wasn't diagnosed as a child!

Anyway, my situation is this: I was very bloated and gassy, with D and constipation, painful abdomen, depression. I decided to go on low carb and of course gluten-free. I feel so much better on low carb than on low fat, plus I need to lose weight. All of the above symptoms went away for the most part, but I am still having a big problem with edema. I have pitting edema in my shin area and ankles. This concerns me, because low carb has a diuretic effect normally. I am also taking ditropan due to urinary issues. I am trying to cut back on salt, but everything I eat is salty, since I don't eat anything sweet. I decided to order some dandelion root to see if it helps.

Is anyone else doing gluten-free low carb? It's nice to find a forum to visit.

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happygirl Collaborator
happygirl
Posted

Welcome to the board!

You may be interested in this article....as well as your doctor.

https://www.celiac.com/articles/1077/1/39-o...bese/Page1.html

TombRaiderShan Newbie
TombRaiderShan
Posted
  • Author

Wow! What an interesting article, thank you! I had no idea that so many celiacs are overweight at diagnosis. I found it interesting how the article stated that doctors will refuse to test overweight patients, since that is what happened to me. I could have just gone on feeling horrible and continued to decline healthwise.

happygirl Collaborator
happygirl
Posted

I'm glad it was helpful.

I'm not sure where you live, but an endoscopy is a pretty "basic" procedure in the realm of medicine. May be worth it to call your local hospitals and ask if they perform routine endoscopies.

May be worth it to look for a doctor that will perform the blood test for you, as well.

TombRaiderShan Newbie
TombRaiderShan
Posted
  • Author

Hi again, happygirl, I live in the middle of Nebraska. I was a bit skeptical as well when he made that claim, since there is a good size hospital only 20 miles away. I don't think it would be prudent to get a blood test now because I have been eating gluten-free for about 2 months, so I would probably get a negative. If the blood test is negative, no doc is going to ok the endoscopy.

I should have pressed the issue when I was symptomatic, but it would have cost a lot (even with insurance), and in the end, I would do what I am doing now. In my mind I have celiac disease, like my mom. Eating this way makes me feel like a million bucks, so even if I can't legitimately say I have celiac, gluten-free has changed my life.

mushroom Proficient
mushroom
Posted

There are hundreds of us self-diagnosed celiacs running around here because no one would test us. It is so sad to think it is still happening. So much unnecessary suffering has gone on, brings tears to my eyes. "When will they ever learn?..When will they EeeeVER learn! But I'm glad you blew 'im off and did the thing you knew was right.

happygirl Collaborator
happygirl
Posted
Eating this way makes me feel like a million bucks, so even if I can't legitimately say I have celiac, gluten-free has changed my life.

This is wonderful!

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DakotaRN Newbie
DakotaRN
Posted

Welcome, I am glad that you are feeling better. I know what it is like to live so far from medical help. I live in rural N.D. Just take it one day at a time. You will find lots of great support her.

Jestgar Rising Star
Jestgar
Posted
gluten-free has changed my life.

That's the bottom line for most of us. I'm glad it's making a difference for you.

TombRaiderShan Newbie
TombRaiderShan
Posted
  • Author

Thank you, everyone for your kind words. :D @mushroom: That makes me feel better regarding the fact that many folks are self-diagnosed, because a part of me felt like I might get chastised here for not seeking out a doc to test me. I appreciate how supportive everyone is!!

Chrissyb Enthusiast
Chrissyb
Posted

I was also overweight when I started eating gluten free with in the first 6 months I lost 40lbs. That was a big plus for me not to mention I was starting to feel better. That was a year ago. I have since had to remove dairy from my diet also and may be more to come once I start doing a food diary since I am still have some problems. It could be that I have a mixed kitchen and I am getting some cross contamination. For the most part though it has been all good.

angieInCA Apprentice
angieInCA
Posted

I'm a gainer. I was 50 lbs overweight at diagnosis. First Dr. told me I couldn't have celiac disease because I was overweight. New GI told me after looking at all my symptoms that he was 99% sure I had celiac disease but I had already stared eating gluten lite and had a very weak positive. I tested positive for DH so I opted not to have the endoscopy, didn't see the need for the time or expense.

I'm 48, was misdiagnosed for 47 years. Gluten free for 7 months and feel better than I ever have in my life.

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    • heart390
      Why now?

      By heart390 · Posted

      THANKS again!!!
    • trents
      Why now?

      By trents · Posted

      Sorry for rambling on so much. It was not clear to me from you first post that, although you have known for several years that gluten had been causing you distress, that you had already eliminated it from your diet.
    • heart390
      Why now?

      By heart390 · Posted

      Because a close friend has had Celiac for years - I've eliminated gluten after the ER said all I had was a huge pocket of gas several years ago.  The gluten will be my 4th autoimmune disease.  Thanks so much for all your input!!!
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      Confused about HLA-DQ Celiac gene test result

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      @ainsleydale1700, the additional test information you provided is very significant! Here is the important part: "This test detects IgG antibodies to tTG (tissue transglutaminase), and was performed because your IgA level is below normal. The immune response that occurs in celiac disease often leads to IgG antibodies against tTG." It looks to me that you may be a "seronegative" celiac. The frontline diagnostic tests for celiac disease are IGA tests, especially the tTG-IGA. However, another IGA test ("total IGA") was done to check you for IGA deficiency and you were found to be deficient. That means that the usual IGA tests done to diagnose celiac disease, such as the tTG-IGA, would not be reliable. That is why the IGG testing was done "reflexively" (which means in response to the results of a previous test, i.e., the total IGA test.). The IGG tests are not quite as reliable as the IGA tests for diagnosing celiac disease, meaning, there are more "other" possible causes for elevated IGG test scores. The IGG test did give a borderline positive result, however, so the physician ordered the endoscopy with biopsy to check for damage to the small bowel lining that would be caused by untreated (continuing to consume gluten) celiac disease. The biopsy showed no damage so the doc concluded you do not have celiac disease. However, the monkey wrench in the gears of the doc's conclusion is that he gave you permission to proceed with the gluten free diet which would have allowed for healing of the small bowel lining to commence. How long were you gluten free before the biopsy was taken? And how much damage to the small bowel lining was there to begin with? If the damage was minimal, it might have been fully healed by the time the biopsy was done. And the symptoms you describe involving vitamin and mineral deficiencies, tooth enamel loss, cessation of menses, neuropathy, constipation alternating with diarrhea . . . IMO all scream of celiac disease as opposed to NCGS.
    • trents
      Why now?

      By trents · Posted

      Yes, other health challenges and even severe prolonged emotional distress are thought to be potential triggers for the latent celiac genes. Let me encourage you to get tested for celiac disease as soon as possible so that you can get on with eliminating gluten from your diet, which itself will involve a considerable learning curve in order to become consistent at it. Even pills and meds can contain gluten because wheat starch can be used as a filler. It's important to know if you have celiac disease for two reasons. First, it damages the lining of the small bowel and, over time, wears down those billions of little fingers that make up the lining and produce a huge surface area for absorbing nutrients from the food we eat. The small bowel is essentially the place where all of our nutrition is absorbed. Long term undiagnosed/ignored celiac disease therefore results in nutritional deficiencies even when we are eating well. You don't need that with the other health issues you are dealing with.  Second, many or most people find it difficult to be consistent with the gluten free diet if they don't have a formal diagnosis of celiac disease. It is just too inconvenient and limiting and they begin to rationalize that, "Well, maybe my problems are due to something else." Human nature has a remarkable capacity to rationalize. It can be argued that you can cheat a little bit on the gluten free diet with NCGS because it only creates a little discomfort and distress but not damage. That doesn't work with celiac disease. So, I feel it is important to know which you are dealing with, especially in the case where you have not yet begun the gluten free diet and you are a good candidate for beginning testing. Many people make the mistake of experimenting with the gluten free diet before they get tested for celiac disease and then they have to go back on gluten for weeks or months, the so-called "gluten challenge", in order to achieve valid test results. By the way, autoimmune diseases tend to cluster. When you get one, it is very common to develop others in time. 
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