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still not convinced!

kitty4751

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kitty4751 Rookie
kitty4751
Posted

hello all. any help is appreciated, thanks in advance! Interesting story here, sorry it's quite long. 

I'm a 22 yo female. I've had GI discomfort for much of high school and college, namely frequent constipation and bloating, abdominal pain. I haven't exactly found the foods that trigger these symptoms. This past year I trained for a half marathon, but had to stop because of awful shin splints. It's been 8 (!!) months since the shin splints started, and just now are they healing. I had xrays and MRIs - no stress fractures. I didn't run at all during this time to give them rest to heal. I was bruising so so easily, I would get welts all over my shins and calves, just from walking! I also had numbness and tingling in the legs. These odd symptoms prompted my primary doc to do blood work in June 2016. Here's what came up:

Assay of gammaglobulin: total IGA 360 mg/dl standard: 50-500, total IGG 1260 mg/dl standard: 650-2000, IGM 95 mg/dl standard: 40-270.

Cyclic Citrullinated peptide (anti ccp) 32 units, standard: <= 19 units. 

This elevated anti ccp antibody prompted my doc to send me to a rheumatologist, who ensured me no I do not have rheumatoid arthritis and that this test was probably a false positive. I don't have swelling or pain in the joints, so okay I'll buy that.

I saw more doctors because I was fed up with my legs not healing! I had a more detailed celiac panel and vitamins checked in August 2016: 

ferritin: 10 ng/dl standard: 10-154, total  iron binding capacity: 532 mcg/dL standard: 250-450. 

vitamins b12 and D are in normal range. 

gliadin (deamidated) IGA AB 8 units, normal: <20 

gliadin( deamidated) IGG AB 3 units, normal: <20

TTG IGA 4 U/ml, >= 4 means antibody detected. 

When the nurse called she didn't mention I've got iron deficiency anemia, but I suppose I do from those numbers? The ever so slightly elevated ttg IGA prompted me to have the biopsy. The initial report states irregular Z line, gastritis and duodenitis. The pathology came back negative for damage to the villi, so I was told no celiac. I'm not sure I buy this, did the scope not go far down enough, did she take enough biopsies? I was told I have Barrett's esophagus and intestinal metaplasia of gastric mucosa. 

I went online to check on check out the online health portal for the new doctor's office I am going to . In there I found blood work that I had done by my pediatrician in high school (may 2012) when I saw her complaining of frequent constipation. I found a ttg-iga test flagged with a strong positive result of 38.3 (in a scale <20 units= negative, 20-30 units weak positive and >30 units is strong positive). I never saw these results until today in November! This result is much more strongly positive than the test I had in august. I'm guessing the pediatrician didn't go over these results with me or my mom in detail. 

Maybe I'm fine and my blood is just wonky, I don't know. Is it possible to have celiac without the intestinal villi damage? Other symptoms I have are: always being cold, canker sores that seem to arise when menstruating, and anxiety which I am prescribed lorazepam for. I have pretty back keratosis pilarsis on my arms. Significant weight loss while I was running, and then weight gain when I stopped. Sometimes I have heart palpitations. Fatigue, but I've been attributing this to doing less exercise from this injury. I am also quite prone to UTIs. 

 

 

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GFinDC Veteran
GFinDC
Posted

Hi Kitty,

It is strange you had a positive from one test in the past but now had a negative in the antibody test.  Have you been eating gluten all this time?  Even before the recent testing?  If you had gone off gluten before the testing that could explain the results.

 

kitty4751 Rookie
kitty4751
Posted
  • Author

@GFinDC i was eating it all the time. i just had my iron checked again last week and I've got iron deficiency anemia. I imagine my doc will liken that to being a menstruating young woman. I just don't know what to do from here. I think I'll try to start over with a better GI doc, i've been going to just a nurse practitioner.

pdm1981 Collaborator
pdm1981
Posted

I had a rough time getting my diagnoses too. Hang in there but be firm with the doctors and insist that they do not write off any of your symptoms. In my case, I was dealing with the VA. I started out just having abdominal cramps one day but they were so strong I couldn't stand up straight. Then the weight loss started. I dropped 20lbs  in 2 months even though I was eating a lot. Then weird stuff started to happen like my eye sight got blurry, my teeth started hurting (all of them), and I got terrible headaches with dizzy spells. The VA said I had PTSD which I told them where to stick that diagnosis. They kept trying to put me on all these anti-depressants and other meds. I wouldn't let them. I went to a different doctor who said it was gall stones so they took out my gall bladder. Everything got worse and another 10lbs was lost. Finally, I went to a third doctor who I told the whole story to. He tried to say PTSD too! I couldn't believe it. I never even told him I was a combat vet. I asked him about it and he told me that I had an Operation Iraqi Freedom hat on and that is how he knew. I looked right at him and told him, "I'm going to take off this hat and you need to pretend you never saw it and I'm going to repeat the same story and then tell me what you think." I did that and just like that, the doctor asked, "Do you have any food allergies?" My point is that he was about to make the wrong diagnosis all because a hat I was wearing. Hang in there. Sometimes you need to find the right doctor. Press them to do the tests you want them to do and if you don't get an answer you like, let them know or try another doctor. Remember, I only got the right diagnosis because I took off my hat. Good luck.

GFinDC Veteran
GFinDC
Posted

Hi Kitty,

There are celiac support groups in some areas that might be able to refer you to a good celiac doctor.  Some hospitals even have celiac centers.  It could help to find a knowledgeable doctor.  You deserve an answer and I hope you find one soon.  There has to be a cause for your digestive symptoms all these years and celiac disease is definitely a possibility considering you had a positive antibody test in the past.

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    • knitty kitty
      Positive biopsy

      By knitty kitty · Posted

      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed.   Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
    • knitty kitty
      Fruits & Veggies

      By knitty kitty · Posted

      Hello, @Jordan Carlson, So glad you're feeling better.   Tecta is a proton pump inhibitor.  PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12.  Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the production of digestive juices (stomach acids).  This results in foods not being digested thoroughly.  If foods are not digested sufficiently, the vitamins and other nutrients aren't released from the food, and the body cannot absorb them.  This sets up a vicious cycle. Acid reflux and Gerd are actually symptoms of producing too little stomach acid.  Insufficient stomach acid production is seen with Thiamine and Niacin deficiencies.  PPI's like Tecta also block the transporters that pull Thiamine into cells, preventing absorption of thiamine.  Other symptoms of Thiamine deficiency are difficulty swallowing, gagging, problems with food texture, dysphagia. Other symptoms of Thiamine deficiency are symptoms of ADHD and anxiety.  Vyvanse also blocks thiamine transporters contributing further to Thiamine deficiency.  Pristiq has been shown to work better if thiamine is supplemented at the same time because thiamine is needed to make serotonin.  Doctors don't recognize anxiety and depression and adult onset ADHD as early symptoms of Thiamine deficiency. Stomach acid is needed to digest Vitamin C (ascorbic acid) in fruits and vegetables.  Ascorbic acid left undigested can cause intestinal upsets, anxiety, and heart palpitations.   Yes, a child can be born with nutritional deficiencies if the parents were deficient.  Parents who are thiamine deficient have offspring with fewer thiamine transporters on cell surfaces, making thiamine deficiency easier to develop in the children.  A person can struggle along for years with subclinical vitamin deficiencies.  Been here, done this.  Please consider supplementing with Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) which helps immensely with dysphagia and neurological symptoms like anxiety, depression, and ADHD symptoms.  Benfotiamine helps with improving intestinal health.  A B Complex and NeuroMag (a magnesium supplement), and Vitamin D are needed also.
    • knitty kitty
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      By knitty kitty · Posted

      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1.   There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine.   In Thiamine deficiency, the body burns its stored fat as a source of fuel.  That fat pad between the aorta and digestive system gets used as fuel, too. Ask for an Erythrocyte Transketolace Activity test to look for thiamine deficiency.  Correction of thiamine deficiency can help restore that fat pad.   Best wishes for your recovery!   Interesting Reading: Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pubmed.ncbi.nlm.nih.gov/31089433/#:~:text=Affiliations,tissue and results in SMAS.  
    • trents
      Positive biopsy

      By trents · Posted

      Wow! You're pretty young to have a diagnosis of SMA syndrome. But youth also has its advantages when it comes to healing, without a doubt. You might be surprised to find out how your health improves and how much better you feel once you eliminate gluten from your diet. Celiac disease is an autoimmune disorder that, when gluten is consumed, triggers an attack on the villous lining of the small bowel. This is the section of the intestines where all our nutrition is absorbed. It is made up of billions of tiny finger-like projections that create a tremendous surface area for absorbing nutrients. For the person with celiac disease, unchecked gluten consumption generates inflammation that wears down these fingers and, over time, greatly reduces the nutrient absorbing efficiency of the small bowel lining. This can generate a whole host of other nutrient deficiency related medical problems. We also now know that the autoimmune reaction to gluten is not necessarily limited to the lining of the small bowel such that celiac disease can damage other body systems and organs such as the liver and the joints and cause neurological problems.  It can take around two years for the villous lining to completely heal but most people start feeling better well before then. It's also important to realize that celiac disease can cause intolerance to some other foods whose protein structures are similar to gluten. Chief among them are dairy and oats but also eggs, corn and soy. Just keep that in mind.
    • pothosqueen
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      26F!
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