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Attempt To Get Diagnosis Or Self-Diagnose?

Emsstacey

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Emsstacey Rookie
Emsstacey
Posted

I have a long, suggestive history of celiac. Lifelong difficulty gaining weight, mouth sores, lactose intolerance, ITP, anemia, family history, and gi symptoms. About 12 years ago had a scope looking for "malabsorption", celiac never mentioned. I don't remember any biopsies taken, the dr just told me afterwards that it looked fine. Fast forward to two years ago, started feeling awful with extreme fatique, body/joint aches, repeated shingles, nonstop mouth sores and osteopenia and extremely low vit d. My dr ran a celiac panel and everything came back negative except for a high deamidated gliadin peptide. I was told that it was not suggestive of celiac but I could see a GI if I really wanted to. I was sick of dr's and opted not to press it.

Now, I wonder every day whether I do in fact have celiac. I have attended a gluten free support group and noone in the group has had good luck with the local dr's. I would like to have an official diagnosis buti have been afraid of wasting my time with dr's who aren't up to date. I have been following the new research on the DGP test and it sounds very accurate and sensitive... Coupled with family history of celiac and many autoimmune diseases and my own suggestive history... It sounds unlikely that I don't have gluten issues.

I would love your opinons on whether I am foolish to self diagnose and forego a formal diagnosis? It seems so often that we have to take our health in our own hands anyways... Why not now?

Thank you!

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DebbieM Rookie
DebbieM
Posted

I really don't know what to tell you except I am in the same boat. Although, I have seen a GI and had an edoscopy that told me I was "suggestive of mild/early celiac".My blood work was negative, but I did test positive for both the celiac genes on the DNA tests. SO...same here....do I just "self diagnosis" or keep trying for a more firm diagnosis. In my heart of hearts, I KNOW (and have been told by so many) I should just go gluten free and call it a day and I know I eventually will. BUT...I really want to know 100% if I have celiac. I was gluten free for 9mos (then did a 3 month gluten challenge before my test) and I am happy to back to that diet, but if I have celiac I will be so much more diligent and never cheat and I will be more watchful with my children. My doctor did not see "enough" to make an official diagnosis, but rather wants me to continue eating gluten for 3 more months and do the biopsy again. I don't know what to do....

Best of Luck....

Debbie

ciavyn Contributor
ciavyn
Posted

If you do a search on here, you'll find a number of threads on this topic. It's a tough call. I'm self-diagnosed, do not have any biological children, and am an adult. I do not need a doctor's excuse for anything, and my dr's are perfectly content to put gluten-free on my chart. I don't have the money nor the inclination to be sick for 3 months. So that is how I look at it. But it is your choice, and you'll have to decide what it is worth. More than anything, I just want to feel healthy. :)

Emsstacey Rookie
Emsstacey
Posted
  • Author

Thank you for your responses! I guess that I have either learned to live with my main symptoms or they just aren't that bad... that the diet doesn't make a huge difference noticeable. Of course, I have only gone 1 month at best. I do live with a lot of fatigue that I would expect to get better as well as general gas/bloating.

What makes me most worried is that if I have a more silent celiac-- then I am continuing to damage my bones as well as other issues. I was shocked to have mild osteopenia at 30 years old as well as a vitamin d level of 18. I also have had shingles every couple of years and I'm just not sure that if my immune system was not battling something like gluten-- that I would have already been dealing with such things.

Anyways, I think I know my answer, but it's so hard to commit when I don't get a pretty quick "sickness" from what I eat. It would be easier if I ran to the bathroom immediately and knew for sure even without an official diagnosis.

jackay Enthusiast
jackay
Posted

Thank you for your responses! I guess that I have either learned to live with my main symptoms or they just aren't that bad... that the diet doesn't make a huge difference noticeable. Of course, I have only gone 1 month at best. I do live with a lot of fatigue that I would expect to get better as well as general gas/bloating.

I suggest you stick with a gluten free diet longer. I have been completely gluten free for five months now. My anxiety went away as soon as I was careful to not get cross-contaminated. Other issues did not go away until I went on a combined elimination and candida diet. I also started a candida supplement. I still suffer from fatigue and lots of gas. The fatigue is getting better as time goes on. My doctor feels that the gas will go away with more healing and changing the strain of probiotics I use.

Foods other than gluten may be causing your fatigue and gas/bloating, as was my case.

I was diagnosed gluten intolerant but did not have the blood tests for Celiac until after I had eliminated gluten from my diet. There is no way I'd add gluten back just for additional testing. I know what I can and cannot eat and that is enough for me. Although I am a bit older than you, I also had osteopenia and low Vitamin D level. My Vitamin D level is now where it should be with taking supplements. I haven't had a repeat dexa scan yet but I do expect that the osteopenia is getting better since I eliminated gluten.

Emsstacey Rookie
Emsstacey
Posted
  • Author

I wanted to update with a response I received today from Vikki Petersen, author of The Gluten Effect.

I am not very familiar with her but signed up for her virtual book tour after seeing it advertised on the Pamela's facebook page. My question can be viewed here on her blog: www.glutendoctors.blogspot.com. I asked about what to do next after being positive for deamidated gliadin antibody and having my doctor not find it significant. She said that she found it very concerning and that I should have been told that my positive deamidated gliadin is an early marker for celiac and I should have been advised to remove gluten from my diet.

It is very nice to finally have someone give me a direct answer, although... I'd rather hear that I can eat whatever I want and not worry about it. ;) Deep down, I know this is what is best for me. I think at this point, living in a rural area with limited knowledgeable professionals on celiac and gluten intolerance-- I am going to go ahead and cut out gluten without worrying about a diagnosis. I hope that I don't second guess myself again in the future. If so, I will probably pursue genetic testing.

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    • Mari
      My only proof

      By Mari · Posted

      Years  ago a friend and I drove north into Canada hoping to find a ski resort open in late spring,We were in my VW and found a small ski area near a small town and started up this gravelled road up a mountain. We  got about halfway up and got stuck in the mud. We tried everything we could think of but an hour later we were still stuck. Finally a pickup came down the road, laughed at our situation, then pulled the VW free of the mud. We followed him back to the ski area where where he started up the rope ski lift and we had an enjoyable hour of skiing and gave us a shot of aquavit  before we left.It was a great rescue.  In some ways this reminds me of your situation. You are waiting for a rescue and you have chosen medical practitioners to do it now or as soon as possible. As you have found out the med. experts have not learned how to help you. You face years of continuing to feel horrible, frustrated searching for your rescuer to save you. You can break away from from this pattern of thinking and you have begun breaking  away by using some herbs and supplements from doTerra. Now you can start trying some of the suggestions thatother Celiacs have written to your original posts.  You live with other people who eat gluten foods. Cross contamination is very possible. Are you sure that their food is completely separate from their food. It  is not only the gluten grains you need to avoid (wheat, barley, rye) but possibly oats, cows milk also. Whenever you fall back into that angry and frustrated way of thinking get up and walk around for a whild. You will learn ways to break that way of thinking about your problems.  Best wishes for your future. May you enjpy a better life.  
    • marion wheaton
      Are Lindt chocolate balls gluten free?

      By marion wheaton · Posted

      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      Are Lindt chocolate balls gluten free?

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      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      Are Lindt chocolate balls gluten free?

      By BlessedinBoston · Posted

      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
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