Having trouble swallowing

[TinyMiracles]

Having trouble swallowing and chewing for 6 months. I was trying to avoid getting a barium swallow done as I had it done three times a few years ago and it gave me such bad pelvic pain I almost went to the ER. To keep it short a few years ago I was having similar issues they only found a small swallowing problem and eventually,  I went back to eating solids.  But for some reason, it decided to come back. Haven't chewed anything in 6 months all my food is puree. I am 24 years old woman with no other health problems that I know of, whatever controls my swallowing when I try to chew I end up swallowing before the food is completely chewed up thus I begin to choke and cough. 

So my GI doctor who diagnosed me with celiac back when I was a teen is nervous to do another endoscopy on me as when he did it before  (a few years ago when I was having the same problem) I had to be hospitalized shortly after (I won't go into too much detail here as I'm trying to keep this short but when he dilated my esophagus something went very wrong and I was in the hospital for few weeks) so he ordered a barium swallow instead. My options to figure out what's going on are very limited as the barium messes up my stomach badly but my GI doesn't want to do the endoscopy unless it's a last resort. Oof anyone else has trouble swallowing?   I just want to bite into something I miss real solid food that isn't mushed up 🤣 haha. 

[trents]

Welcome to the forum, TinyMiracles!

You don't say, so I'll ask this question for clarification. Have you been following a strict gluten free diet since diagnosis? And, how long did you have celiac symptoms before being diagnosed in your teen years? This might be a combination of gluten-induced neuropathology and the damage done by the esophagial dialation.

[Wheatwacked]

Hopefully you have been on a gluten free diet, as per your GI's diagnosis of Celiac Disease.  Untreated celiac disease is a major cause of malabsorption syndrome which will lead to various nutritional deficiencies.  Once the thiamine is dealt with you will likely have symptoms of other essential nutrient deficiencies, such as vitamin D deficiency, B2, 3, 5 ,6 , Folate, Choline, Taurine, Iodine, Zinc.  The quicker these are dealt with the quicker you will recover.   

    " Wernicke Encephalopathy Presenting with Dysphagia: A Case Report and Systematic Literature Review  Wernicke encephalopathy (WE) is a well-known neurological condition caused by thiamine (vitamin B1) deficiency that occurs in both alcoholic and non-alcoholic populations. We aimed to report a case of a patient with WE who presented with dysphagia and dysphonia and later developed typical symptoms of thiamine deficiency"

    "Beriberi (Thiamine Deficiency) Workup   If laboratory confirmation is needed, measure blood thiamine, pyruvate, alpha-ketoglutarate, lactate, and glyoxylate levels. Also, measure urinary excretion of thiamine and its metabolites. A scarcity of any of these chemicals strongly suggests thiamine deficiency."

   " Hiding in Plain Sight: Modern Thiamine Deficiency  Classically defined thiamine deficiency (TD) disorders in the context of alcoholism and malnutrition are familiar, taught in science and health textbooks from high school onward, and yet, for all of that familiarity, not only are most severe cases of deficiency missed, but the early stages, where symptoms are most easily treated, are entirely disregarded...the RDA requirement may be insufficient to meet the demands of modern living. Inasmuch as thiamine deficiency syndromes pose great risk of chronic morbidity, and if left untreated, mortality, a more comprehensive understanding thiamine chemistry, relative to energy production, modern living, and disease, may prove useful. "

    " Thiamine concentrations are not offered as a routine test. In New Zealand, thiamine deficiency is seen almost exclusively in patients with malabsorption due to gastrointestinal disease, eating disorders and in alcoholics. In this setting thiamine deficiency occurs in combination with multiple other vitamin deficiencies (e.g. pyridoxine, pantothenic acid, biotin, riboflavin etc.). It is rarely helpful to test blood levels of specific vitamins, as the turnaround time is slow (several weeks) and the results are poorly correlated with the clinical response to multivitamin therapy.  Assessment of the clinical response to thiamine therapy is usually a more appropriate way of making the diagnosis of thiamine deficiency."

@knittykitty has the most comprehensive information on Thiamine.  The simple test, used by the World Health Organization is to supplement Thiamine or Benfothiamine at high dose ( there is no upper tolerable limit set )  of 300 mg or more. The body can store between 30 and 50 mg of thiamine and is likely to get depleted within 4–6 weeks if the diet is deficient. However, it has been suggested that, although thiamine transport occurs through the energy-requiring, sodium-dependent active process at physiologic concentrations, at higher supraphysiologic concentrations thiamine uptake is mostly a passive process. Smithline et al. have demonstrated that it is possible to achieve higher serum thiamine levels with oral doses up to 1500 mg. The thiamine transporters limit the rate of absorption of orally administered thiamine. Allithiamines (e.g., benfotiamine) are the lipid-soluble thiamine derivatives that are absorbed better, result in higher thiamine levels, and are retained longer in the body.

[knitty kitty]

@TinyMiracles, welcome to the forum!

Yes, I've experienced trouble swallowing, stuttering, hoarse voice and hearing loss, all symptoms of early Thiamine deficiency.  My doctors didn't recognize these symptoms as thiamine deficiency symptoms. 

High dose Thiamine was the answer.  I took high doses (1200 mg) of over the counter Thiamine Hydrochloride supplements over the course of a day for months.  I also took Benfotiamine and Allithiamine, other forms of Thiamine that work really well.  My symptoms began to improve within an hour and steadily got better.  It was a miracle.  

I found Dr. Derrick Lonsdale's studies and work in Thiamine deficiency most helpful.  

Vitamin deficiencies do occur in Celiac Disease even if strictly gluten free.  Gluten free versions of breads and such are not required to be enriched with vitamins and minerals.  We need to find alternative food sources of these essential vitamins and minerals, and supplement when necessary.  Since CeD damages small intestinal villi, absorption of nutrients is affected.  Supplementing is a great way to help your body repair itself.  

Thiamine is the vitamin that can become deficient in a very short time, in as little as three days if you're already low.  Subclinical thiamine deficiency symptoms can drag on for years waxing and waning mysteriously depending on how much Thiamine is consumed.  A 20% increase in dietary thiamine will produce an 80% increase in brain function.  The brain, just thinking at a desk job, uses as much Thiamine as muscles use running a marathon.  Scientists are linking illness with mitochondrial dysfunction.  Thiamine deficiency directly affects mitochondria.  

Blood tests for thiamine aren't an accurate measurement for deficiency since depleted stores of thiamine inside cells cannot be measured that way.  The WHO's field test for Thiamine deficiency is seeing if a person can rise from a squat.  (I could not rise from a squat!)  Since Thiamine is nontoxic, a trial of 500 mg or higher and looking for improvement is really simple.