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Update...and A New Symptom?

Kitty Marmalade

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Kitty Marmalade Newbie
Kitty Marmalade
Posted

Hi everyone -

I haven't posted since my initial post, but I have been reading the boards. :) Here's my original post with a list of my symptoms - https://www.celiac.com/forums/topic/95480-newbie-with-a-long-list-of-symptoms/page__p__815435__fromsearch__1#entry815435

I saw my doctor a couple of weeks ago and while she still will not test me for celiac or Hashimoto's, she agreed to put me on Cytomel along with Synthroid because my TSH levels are still too high - 25, which is much higher than it should be but way better than it was the last time I got tested, when it was 118. She said I'm one of two patients she has that don't seem to respond to Synthroid alone.

And I was hospitalized for a couple of days earlier in September - with THREE blood clots in my left leg! At first my podiatrist thought it was cellulitis but when the heavy-duty antibiotics he had me taking weren't doing anything for it, he sent me for a doppler test which showed the clots. My podiatrist and GP both agree they were most likely caused by my foot fracture and the subsequent month and a half of immobility. I'm currently taking coumadin and will probably have to for at least six months.

My chiropractor - who is also a naturopath - suggested I go on a grain free and sugar free diet to help my body heal from these traumas. She said once I heal, I will be able to eat grains again, but it's probably a good idea to stay away from wheat and gluten. I've been doing okay going sugar free (surprisingly, because I have a massive sweet tooth) but the grain free part has been a real problem and I admit I haven't been really diligent about it. It doesn't help that I'm not getting any support from my family. They don't put any stock in my chiro's suggestions because she's just a chiro. I keep getting the "oh, just a little bit won't hurt you" thing. And complaints that my "weird food" is taking up valuable pantry space. So sometimes I just give in, to keep the peace. Ugh!!! mad.gif

Which brings me to my new symptom - for the last week and a half or so I have had a severe stomach ache every day. I wake up without a stomach ache but between 1-2 PM it starts coming on, then lasts all afternoon, evening and even into the night. When I wake up the next morning, it's gone. It feels a lot like gas pains, but without the gas, if that makes any sense. I have read that coumadin can cause abdominal pain, mostly from bleeding, but I don't have the other signs, like dark urine or "coffee ground" poo. Plus, the pain is there whether I take a pill or not (my current dosage is one day on/one day off). And why does it come on the same time every day? Could this be a coumadin issue or is my body giving me another sign that I should be gluten free?

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GottaSki Mentor
GottaSki
Posted

Wow Kitty - I read your original post - it is amazing that your doc won't test you. I happen to be one of the folks that gained weight with no explanation for years so I completely understand and have experienced the "you can't have celiac disease - you are not underweight" mentality.

Can you change doctors?

When you were grain free recently did you spend any significant time (days or weeks) completely gluten free?

If you have not spent any time gluten-free and you can not switch docs, perhaps you should consider getting a full celiac blood panel on your own. I recently found a national lab chain that will run the full panel for about $200.

Your symptoms certainly indicate you should try removing gluten from your diet - just don't do it until you are certain you are done with testing - the blood tests measure the antibodies that are created in reaction to gluten - remove gluten and your blood tests will be inaccurate and indicate you don't have Celiac Disease. Once testing is complete - remove ALL gluten.

Good Luck!

shadowicewolf Proficient
shadowicewolf
Posted

This is why its so hard to find a good doctor.

Invictus Newbie
Invictus
Posted

I completely understand where you are coming from; I had a doctor laugh at me when I said:

"I need to be tested for celiacs."

He said: "You are too overweight to have it" "Do you even know what it is?" and proceeded to laugh

I saw RED and was seconds away from physically destroying him

guest134 Apprentice
guest134
Posted

This is why its so hard to find a good doctor.

You had a TSH of 118 but your doctor refuses to test your thyroid? She then gives you synthroid and you go down to 25, instead of upping your dose of synthroid (which should be done to thyroid hormone levels not TSH) she adds in some random other drug. How do some people get their medical degree? That is just crazy, leaving your TSH that high can cause goiter. Find yourself a new doctor this one sounds dangerous.

MitziG Enthusiast
MitziG
Posted

A doctor is someone YOU hire to treat YOU. Your doc is not doing their job. If you request a test, your doc needs to do it. You pay the bills, right? If you can't be forceful enough with this doc to insist on the testing, then find a new one, pronto. You would be better off anyway, as this one obviously isn't very up to date on her stuff. You definitely need to have a full celiac panel done, as well as testing for Hashi's. Time to take charge of your own health and stop getting pushed around.

frieze Community Regular
frieze
Posted

You had a TSH of 118 but your doctor refuses to test your thyroid? She then gives you synthroid and you go down to 25, instead of upping your dose of synthroid (which should be done to thyroid hormone levels not TSH) she adds in some random other drug. How do some people get their medical degree? That is just crazy, leaving your TSH that high can cause goiter. Find yourself a new doctor this one sounds dangerous.

cytomel is also a thyroid med.

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      By cristiana · Posted

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    • Mari
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      By Mari · Posted

      Hi Katht -  I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal  function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was very true for me. I am still elimination foods from my diet. One person suggested you keep a food diary and that is a good idea but it is probably best just to do an elimination diet. There are several ne and maybe one for celiacs. I used one for a while and started with plain rice and zucchini and then added back other foods to see if I reacted or not. That helped a great deal but what I did not realise that it would only very small amounts of some foods to cause inflammation in my intestine. Within the last few years I have stopped eating any trace amounts of hot peppers, corn and soy(mostly in supplements) and nuts, (the corn in Tylenol was giving me stomach aches and the nuts were causing foot pains). Starting an elimination diet with white rice is better than brown rice that has some natural toxins. In addition it is very important to drink sufficient plain water. You can find out how much to drink for your height and weight online. I do have difficulty drinking 48 ounces of water but just recently have found an electrolyte supplement that helps me stay well hydrated, Adding the water and electrolytes may reduce muscle cramps and gag spams you wrote about. . Also buy some anti-gluten enzyme capsules to take with meals. I use GliadinX advertised here. These are a lot of things to do at one time as they reflect my 20 years of experience. I hope you do what you can manage to do over time. Good luck and take care.
    • Colleen H
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